Expanding the Advocacy Message and Growing Through Grassroots EffortsFriday, February 08, 2013
In this second installment of a two part interview, mountain biker and diabetes advocate Tony Cervati talks about his second diabetes organization, the Blue Heel Society, his grassroots approach to advocacy, and the important role of social media and the diabetes online community in giving people with diabetes a platform to learn from and support peers.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
A little over a year ago, Tony Cervati and his fiancée, Diane Pridmore, found themselves talking about ways they could expand their diabetes advocacy efforts.
Diane’s son, Andrew, has type 1, and both Tony and Diane were looking for a way to lend a voice and a platform to parents of children with diabetes as well as others in helping the outside world understand what challenges and issues they faced.
Diane, who is a big fan of shoes, came up with the idea of using blue shoes as a tangible, visual way to get people to engage in conversation. As the blue circle is used as the symbol to represent diabetes and World Diabetes Day, Diane decided to use blue shoes as a sign of unity, and thus the Blue Heel Society was born.
The development of the Blue Heel Society has been a nice way to complement Tony’s existing Type 1 Rider organization. Type 1 Rider is a platform for fellow bikers and other athletes with diabetes which lends support about training advice including troubleshooting any issues that might be related to disease management and sports.
DiabetesCare.net spoke to Tony further about Blue Heel’s mission, social media’s role in lending diabetes support, how medical providers can help their patients further, and his thoughts about a cure.
DiabetesCare.net: Can you talk about what the goals of the Blue Heel Society is?
Cervati: The goals of the Blue Heel Society are very similar to Type 1 Rider, but it is done through the very real act of wearing blue shoes. The idea is you wear blue shoes, no matter what you are doing. It could be you and a group of people attending a local PTA meeting at your school wearing blue shoes. And seeing a group of people wearing blue shoes will eventually get other people asking why everyone is wearing blues shoes. This provides an opportunity for diabetes awareness.
We try to do supplementary support to whatever you are running. It doesn’t matter to us if you are running a book club, or a pet adoption day, or attending a church function, you wear the blue shoes to get noticed and advocate for diabetes. And hopefully be able to start conversations with others who might not be as aware of diabetes.
However, it is important to point out that neither Type 1 Rider or The Blue Heel Society differentiate from type 1 or type 2 diabetes; we support everybody who has been affected by diabetes. We are very open societies, and all of us affected are in the same boat.
In that way, it is like the diabetes online community, which is a very unique family. We all have a saying that goes, ‘your diabetes will vary`, but we are all faced with the same challenges from it.
That’s why we have Blue Heel which provides a safe, nonjudgmental place where anyone can come out and express his or her feelings and have a discussion about diabetes and how it is affecting his or her life.
It is just over a year old now, and The Blue Heel Society has touched a lot of people and has completely taken off.
DiabetesCare.net: The Blue Heel Society recently started its Chapter Luminary program. Can you explain what that is?
Cervati: We invite people to become luminaries of a local chapter. All people have to do is go to the Blue Heel Society website and fill an online form. We ask you what your relationship to diabetes is and what you are planning to do. There is no charge, and we provide the engine to help you.
We offer an @inmyblueshoes.org e-mail address, and allow the luminaries to guest blog on the Blue Heel website. We also give them access to our Facebook and Twitter accounts, as well as an event calendar. We try to give them visibility and support for their own local diabetes advocacy efforts.
DiabetesCare.net: The Blue Heel Society gives parents of children with diabetes a chance to express themselves and the challenges they deal with. Why is it important to include parents in the discussion?
Cervati: The Blue Heel Society is a great vehicle for parents. Diane has a gift at providing a safe platform that parents of a type 1 child would be able to relate to. Her own experiences and honesty is why a lot of discussions revolve around parents and their issues.
DiabetesCare.net: You are involved in various projects within the diabetes advocacy industry. And while you wear many hats, are there one or two consistent themes or goals you are thriving for when you take on new projects, or do you see everything as an individual project and look to reach a different goal every single time?
Cervati: We have been involved in various projects from car washes to bike rides to auctions to everything in between, and there are two underlying goals: to promote diabetes advocacy and communicate the message that diabetes will not stop you.
With the advocacy piece, we try to help people understand the disease and the issues surrounding it better. On the other side, whether through the bike or doing a walk or something else I want to express the fact that diabetes doesn’t stop me from doing anything. I spend a lot of time with people who are newly diagnosed. These indivduals want to know if they or their loved ones are going to be ok, and if they are going to be able to live a normal life. Of course the answer is yes, but in the fog of diagnosis, sometimes these messages get lost.
DiabetesCare.net: Social media has been such a huge help in how people think about disease management. How do you find social media helps people with diabetes?
Cervati: It closes down the distances. For example, there might be someone who is a teenager who was diagnosed two years ago who lives in Washington state and wants to get on a cycling team or do some racing. Without social media, the ability for that teen to connect and share information would simply not be there. It is so easy now for that person to jump on the net, Facebook, or Twitter and do a search for “diabetes cyclist” and find others who face the same challenges.
Diane and Tony are co-founders of the Blue Heel Society; Tony talking to a young man at a race.
Being able to have those connections and discussions today, whether it be in a group or one-on-one level, are absolutely priceless.
Even with my 36 years of diabetes experience, I usually walk away from social media conversations learning more than I could offer or share. I learn about others through their techniques and how they approach and solve problems.
Social media is the ability to have two way discussions and interactions where everybody is learning and sharing. Even if something I’m doing may not work for the person I’m talking to, they might say, ‘Tony did it this way, and I should try doing it this way for me.’ Or, maybe I find out someone carries their insulin on their bike in a certain spot, I might try that. Social media opens up all sorts of discussions.
While I feel I’m very blessed with my medical providers, and this hasn’t been my personal experience, a lot of times going to the endocrinologist is a one way street. They tell you your numbers and what you need to be doing, and they don’t understand the full gamut and emotional aspect of diabetes.
DiabetesCare.net: To your point about the one way street, and looking at it from your personal perspective of someone with type 1, how can medical providers better help people with diabetes with their disease management?
Cervati: Something I hear all the time from people with diabetes with regards to this is the expression, ‘walk a mile in my shoes.’ There are some care providers who could benefit from this.
Joe Largay, the provider who takes care of me is type 1; and my diabetes educator, Camille Izlar is type 1 too. When I go in to talk with them, and I say something like, ‘I was low on this day, and this is what happened.’ They will nod their heads because they have likely had a similar experience.
Sometimes, I think it is difficult for the non-diabetic care providers to understand where feelings, fears, and issues come from. It is easy for a provider to question you and say, ‘what do you mean you won’t pull out your test kit while you are at the dinner table at a restaurant with your fiancée’s family?’ They might follow-up and say, ‘just test your blood sugar before you eat.’
They may not understand there are emotional feelings behind that. There are times when it might be difficult for the care provider to go that extra step to feel the emotional component on that level.
I also understand that medical providers have to see so many patients a day, and that it is their business.
Getting involved with social media might be a good way for some providers to understand people with diabetes better.
For example, if you go on any Facebook diabetes support page, there will likely be a parent of a child with diabetes, and they are saying their child has had a high or low reading for the fourth night in a row, and they are frustrated and afraid and at his or her wit`s end with a very complicated disease. Sometimes I think providers miss that whole part of it. It`s not "in clinic." It`s "everyday living."
(Below) Tony speaking at a Tour De Cure Kickoff.
DiabetesCare.net: As a longtime veteran of diabetes, what are your thoughts for the future in terms of a cure?
Cervati: When I got to high school, I remember saying to myself, ‘a cure is only 10 years out.’ And then going into college, I was thinking the same thing that a cure was coming.
I have completely given up on reading about the latest treatments and cure technologies because I have heard that refrain, ‘there will be a cure in 10 years,’ now almost four times over.
Having said that, I do believe there will be a cure for diabetes someday; it is inevitable. The underlying nature of humans is to explore and keeping pushing boundaries. It’s something we are very good at.
I’m not sure I believe 100 percent in how a cure is being sought out; and how the dollars are being spent in the way they are. We are really no closer to a true cure than we were 20 years ago. Of course now we have more knowledge and a greater understanding about the disease, and we have been management techniques and tools, but I’m not sure we are really any closer to curing type 1 or type 2.
I think of the old saying, ‘the definition of insanity is doing the same thing over and over again and expecting a different result.’ I think it is time to do something else in terms of finding a cure. A different way to pool or spend the donated dollars, or reward researchers.
However, right now, I am much more focused on living the best I possibly can with diabetes today. Right now.
This is the second installment of a two part interview with Cervati. To read the first interview go here.