Posts Tagged ‘Speaking out’

Helping our friends

July 13, 2009

In case you haven’t noticed – who could miss it – the US Economy is still weak. And I know from personal experience that community based organizations are the first to take a financial hit: I voluntarily left a small agricultural museum when we were struggling. After the events of September 11, 2001, tourism dropped dramatically and we were barely hanging on.

But that was then and this is 2009. Smaller support and advocacy organizations are feeling the heat. Donations are down across the board. A friend works with a community food bank, and according to him, “We’re keeping the lights on and not much else.”

So… how’s your Congenital Heart Defect (CHD) support group doing? They may have a policy of not releasing financial information, but if you have been a member for any length of time, you can tell. But I know from experience that a lot of them are hurting – and they are cutting services to the bone, just trying to survive.

Your CHD organization would certainly appricate a donation, and every little bit helps. To be completely honest, I’m going through my own money crunch right now and I haven’t donated to the ACHA in a while… but as soon as I work this out, I am going to.

Another thing that you can do is learn how to share your story. With everyone cutting back, your support group’s Outreach and Advocacy programs have certainly been reduced. No one’s telling about all the great things that they are doing and the people that they are helping.

And that’s where all of us can help. If you have a CHD or you are the parent of a Cardiac Kid, you’ve got an amazing story to tell. Think it through, write it out, and learn how to tell it. I wrote about how to tell your story back in December; you can read those posts HERE and HERE. And be sure to mention your support group – they’re the gang that will ride into battle with you; and they are there for you through thick and thin. This time they are hurting and its only right that you come to their rescue.

There are approximately two million of us living with a Congenital Heart Defect. If we all start telling our stories, we can raise awareness and help our support groups survive the economic downturn.

It’s up to us;

Tell your story: How to make it simple

December 3, 2008

So you’ve decided it is time to speak out about Congenital Heart Defects. Thank you! The more of us who are willing to tell our stories, the more people understand that we live normal lives, yet we still need specialized medical care. And better insurance. And a National Registry. And a host of other things, but we don’t need you to feel sorry for us.

The very first time you stand up to speak, you’ll feel like you are standing on the ledge of a very tall building. Relax (if you can!); it happens to everyone. And the more opportunities that you have to share your story, the more comfortable you will become. Until then, here’s a few tips to remember:

Dress the part – If you know you’re going to be speaking, then think of yourself as an invited guest and dress like one. There is no rule that says you have to be in a coat and tie, but if I know that I’m speaking I’ve got on nice slacks, a clean shirt and a sportscoat, at least. Even if you don’t expect to speak, don’t dress like you just walked in from the gym. It just doesn’t look good.

Tell YOUR story – You have a unique set of experiences that very few other people have. Your audience wants to hear about how you or your child deals with having with a Congenital Heart Defect.  Give them what they want… it’s that simple!

Speak for eight minutes — Work your speech out to the point that you can deliver it in eight minutes, if there aren’t any interruptions. Eight minutes is long enough to get your point across and short enough not to bore your audience to death. If your audience laughs or applauds, pause and let them finish. Audience interruptions will only stretch your speaking time to about ten minutes, and that’s perfectly acceptable. There will be times when you can speak longer, but eight minutes is just fine.

Go Fishing – Hook ’em and reel ’em in! Catch your audience’s attention the moment you begin. If you’ve read Funky Heart, then you probably know that my third heart surgery went wrong when they cut my chest open. So I begin by saying “I’m probably the only person in the room who has had two and a half heart operations!”

Describe your heart – Have a simple way to describe your heart and what is wrong with it. Amy Verstappen describes her heart as a house that has some major construction problems: Rooms are in the wrong place, the hallways don’t line up with the doors, and the windows stick. I describe a healthy heart as a circle split into quarters… and mine has a good chunk of the lower right section missing, along with some holes in the walls. Find a memorable way to describe your heart!

Remember what’s important – With only eight minutes to speak, you have to hit the important stuff quickly. So you should limit yourself to…

Three points – But the one point is going to be your “action point”, when you emphasize an action. Sometimes your action point will even be preselected for you: at Lobby Day 2007, we campaigned for a National Heart Defect Registry. Your action point can be first (I want you to support CHD research, and here’s why…”) or it can be last (“I’ve told you all this to ask something of you…”). So decide what your action point is going to be, where in your speech you want to present it, and build around that.

Don’t use “Heart Speak” – When you have the opportunity to speak to a group that has little experience with Heart Defects, stay away from the “verbal shorthand” we use. Saying that you have Tricuspid Atresia makes perfect sense to some people, but it won’t mean a thing to others. Even when you are speaking to CHD groups, you should explain any technical words you use. A Heart Mom with a child who has Hypoplastic Left Heart Syndrome may not know what Tricuspid Atresia is… her Cardiac Kid has his/her own problems to worry about.

Pick the right words – I don’t have a Cardiologist. Actually, I do… and he has a partner, and they both have nurses, and someone to answer the phones, and someone else to keep the paperwork in order. So I don’t just have a doctor, I have a healthcare team! And when I need specialized heart care, my healthcare team is my weapon of choice! English has a lot of words that aren’t used very often, so put them to work. They can recapture your audience’s attention if their minds start to drift.

Don’t Rush – There’s an old saying: “Slow is smooth, and smooth is fast.” Don’t rush yourself. Eight minutes is longer than you think. Go slow, be smooth – keep your  “um!” and “You know!” to a minimum –  and you’ll be done before you wear out your welcome.

Don’t Cry – Don’t cry in front of your audience. I know this seems to be the perfect time to show emotion, but the instant that you start crying, the audience stops listening and starts thinking “Awww… that’s so sad.” Their emotions get the best of them too, and it usually works against you.

Finish Strong – Everyone lived happily ever after, right? Unfortunantly, the story doesn’t always end that way. But always try to end on a high note. Jim Valvano, the former Men’s Basketball Coach at North Carolina State University, made sure everyone knew he wasn’t giving up nor was he giving in…. even though he was dying of cancer. “Cancer can take away all my physical abilities,” Valvano would say. “It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever.”