Every Patient's Advocate

Sorry Oprah. Signing Jenny McCarthy? You’ve Lost This Fan

I’ve always admired Oprah.  To me she has been the perfect example of the American dream, while retaining her moral compass and behaving ethically.  Until recently, she managed to make her billions by keeping the best interests of her audiences at heart. She had my admiration and my respect.

But no more.

Keep in mind, that when I mention ethics and morals, I’m not suggesting she avoided controversy or wasn’t willing to stick her neck out politically.  Of course, Oprah has been at times controversial and political.

As she has every right to be!  It’s her show / magazine / network / production company / conglomerate! She hasn’t earned her following by being neutral or wishy-washy.  Even when I have disagreed with her opinions on some topics, I still believe she has had every right to voice them.

But until recently, when she has taken a stand, she has done so to improve her audience’s knowledge of a topic, or to help them understand why she believes the way she does.  Oprah has helped us understand point-of-view, whether or not it’s our own point-of-view.

And until recently, I have admired her ability to bring so many and varied points-of-view to her audiences, without her #1 focus being how she could make money from it.  Granted, she invites guests who will maximize the size of the audience, meaning, indirectly, increased income from sponsors, magazine and TV show advertisers, etc.

That’s fair.

What’s wrong is what she has done recently and that is, she has signed a contract with Jenny McCarthy. McCarthy is no longer a once-in-awhile guest.  Now she’s one of Oprah’s annointed ones.  It marks a shift for Oprah, a shift in the wrong direction.

And now, I am no longer a fan.  For the first time, I believe Oprah has traded her media soul to the money-making devil.  And that has tainted everything she will do from now on.

In case you don’t know who Jenny McCarthy is, she is a former playboy bunny – come – self-proclaimed expert in autism.  McCarthy has a son who she claims to have cured of his autism.  She has written books, marched on Washington, and been very vocal, presumably on behalf of families of children with autism.

For the record, I do not claim to know much about autism at all, and for all I know, maybe she HAS cured her son.

What I object to is not McCarthy’s work in autism — rather — her stance that since she believes her son’s autism was caused by vaccines, she now adamantly advises new parents to refuse to have their children vaccinated for childhood diseases.  Her son was born in 2002.

Here’s the problem with that:

First — there is no proof that vaccines cause autism. In fact, all the proof is to the contrary. The agent contained in vaccines that some argued may have caused autism was called thimerisol. Thimerisol has not been used in any vaccines since 1999.  Yet, the number of children diagnosed with autism is on the rise.  Clearly, something else is causing it.

The second problem — that vaccines have been developed strictly to destroy the diseases that destroy lives, but they can’t do their job if they aren’t being used.  Think of the millions who were injured or killed by polio before the polio vaccine.  Today, the only people getting polio are those who have not been vaccinated.  If children are not vaccinated they will risk polio and it’s their parents who, by choosing not to have their children vaccinated, will put their children at risk.  That’s true, too, for every other childhood disease.

Read Time Magazine’s interview with McCarthy. And McCarthy’s very classy quote,

“I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___.”

(Those are Time Magazine’s bleeps, not mine.)

As one friend put it:  Jenny McCarthy is systematically destroying children’s and families’ lives by taking such a dangerous stand.  How is that any different from Adolph Hitler?

Jenny McCarthy is not an MD. She has no medical credentials whatsoever.  Yet young parents are listening to her because they are desperate to find someone who can help them with their autistic children.  If they listen to what she has to say about helping their child recover from autism — great.  But to listen to McCarthy’s medical advice about vaccines?  That’s foolish.

Now — returning to Oprah. Oprah has had Jenny McCarthy on her show any number of times.  That’s a good way to showcase McCarthy’s point of view, especially when it’s contrasted with those who are experts, those who really do know something about autism and vaccines.

But to sign McCarthy on, as she has with Dr. Phil McGraw and Dr. Mehmet Oz?  They ARE doctors!  What message is that sending to those who can’t discriminate who does and who does not have good information? (And I wonder how Dr. Phil and Mehmet Oz feel about being in the same media camp as McCarthy?)

And won’t it be interesting when McCarthy spouts her medical opinions (opinions, NOT facts) on her show, a parent does not get her child vaccinated, that child and others are debilitated or die from McCarthy’s advice?  I wonder if Oprah will be sued along with McCarthy?  Afterall, it’s Oprah who has given her the platform.

Oprah — sorry — but you’ve stepped over a line of trust and respect.  You made that flip to the darkside, all in the interest of growing your franchise and making money.

You’ve lost this fan, and I suspect, many others.

Update 5/31/09: Apparently Newsweek agrees with me. Oprah has truly stepped over the line.

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Why Twitter Doesn’t Work

.. at least not for you.

Because it works great for me.  And has helped me learn as much about patient empowerment issues in the past few months than ever I could have learned in any other way.

Wonder why you can’t gather more followers?  Wonder why people unfollow you?  Wonder why no one reacts to what you’ve posted?

The answer is actually quite simple, and if you give it a try, you’ll decide Twitter works for you, too.

Here’s the problem:  Many people think Twitter is like a bulletin board.  They think they are supposed to post information and everyone else will flock to see what they have to say.

But that’s not it. Even though the question at the top of Twitter is, “What are you doing?”  you are better off ignoring that and going with this approach instead:

Think of Twitter as an ongoing conversation that you are welcome to drop into or out of at any time.  Instead of using it as a billboard, use Twitter to engage with others — THAT’s the real value.

The skills that make Twitter work aren’t about posting. They are about listening, posing questions, asking advice, congratulating, being sympathetic, cracking jokes, being clever …. In effect, the same skills that make you a good friend, are the same skills that make Twitter an incredible resource for you. Sure, you can talk about yourself on occasion.  And you should! But mostly you want to be tapping into others’ knowledge, learning and sharing.

Think of it this way:  suppose you went to a party or a networking event, and the only thing people ever did was brag.  They never asked you about who you are or what you do, or why you are there.  They never offered you anything to eat or drink.  All they did was talk about themselves. Boring! Self-centered! Pompous! How much time would you want to spend with them?

Not much, of course.  So if all you are ever doing on Twitter is telling people what you are doing, if you aren’t engaging in a conversation with them, then you come across as that same boring and pompous person.

So go back to Twitter (or sign up to use it — here is some good advice for getting started with Twitter).  Begin responding to people.  Even if they aren’t following you, they’ll find your questions.  (You can find anything that’s been said to you, even if you don’t follow people, by searching for just your name — no @ sign or even # sign. Just type your twitter ID into the search box and you can see if someone has asked you a question or responded.)

Personally, it drives me crazy when people post but never engage.  I have stopped following many who only ever tell me what they are doing, but never seem to be interested in what others have to say.

The conversations can be interesting, or funny, or stimulating… friendly, or abrasive, or professional, or even life saving.  I’ve made new friends, I’ve gotten to know others from around the world, and I’ve gathered potentially life saving information for a woman who needed help for her son.  An incredible resource.

The bonus is, that the more people who you engage with, the more followers you will have.  So when you do have something worthwhile sharing, more people will see it.

So join the conversation!  If you follow me, then please say hi — I’ll find you and will respond, I promise, even if I don’t follow you back.

@TrishaTorrey

I look forward to meeting you on Twitter.

PS – once you begin truly engaging… and you really love it… and you can’t get enough of it… don’t fall victim to the opposite problem – Twittiarhhea!  Just like the people who talk TOO much at a party, you may be unfollowed because you post too often.  Balance is the key.

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Swine Flu and Chicken Little – Too Much Hype?

After a week of hearing that the sky is falling because swine flu was going to take us all down, there’s a lot of second guessing about whether government(s) and the media have over-hyped the potential for a pandemic, and whether we have all over-reacted to the fear.

I say – we have not overreacted – but I worry about Chicken Little.

The initial reports from Mexico indicated real potential for problems.  Governments, WHO and the media were in a d*mned if they do and d*mned if they don’t position:  Had they NOT reacted, then I guarantee you, the flu would have spread faster, further and more people would have died.  Then they would have taken the hit for not reacting appropriately– like George Bush deservedly did for Katrina — and we would all be left behind cleaning up behind the mess.

So I believe the reaction and the hype, and the reminders about the impact seasonal flu has on all of us, are warranted. I, for one, appreciate it.  Lives have been saved.  Awareness has been heightened.

That said…

I actually have more concern about the next time around. Whatever virus mutates, whether it be bird flu, swine flu, or hippopotamus flu — no matter which one it is — will we all be (pardon the pun) immune to the hype?  Will we ignore the governments and media who try to prepare us to keep us safe?  Will we go about our daily business tuning them out?  Will we turn a deaf ear because “remember swine flu?  no big deal!”

Chicken Little (who may be carrying bird flu, by the way) reminded us that the sky CAN fall when we don’t pay attention.  So the real point is that we need to be prepared with falling-sky contingency plans.  That’s what WHO does.  That’s what governments do.  That’s what media reports.

We just need to be sure we pay attention and take action, regardless of how hype-y it seems to be.

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