Friday, January 12, 2007

Crap

I feel like I failed. First let me say this has been exhausting two or three days so my post will be fairly brief tonight. CNN worked frantically throughout the day to find studio space nearby for us to do the satellite hook-up. About three this afternoon I get a call to tell me that it appeared the best option was to send some free-lance folks out of Charlotte and do the interview at our house. That's exactly what happened.

The folks behind the scenes were awesome. Dave and Terri who work for some production company in Charlotte were absolutely awesome in dealing with the pig sty we call our den. Those two were solely responsible for what you saw on TV and they were great with Ben. In all honesty they had me very relaxed as our part of the segment began.

The two producers for CNN that I dealt with, Kari and Melissa, were fabulous. They are good folks and appreciated hearing "our" side of the story. I wish I could've done a better job of relating my thoughts.

I did not have any conversation with Paula Zahn other than what you saw on TV. I was looking at a camera lens and responding to questions asked of me through an ear-piece in my left ear. At this point I don't even know what we looked like. I know that Ben was laughing his ass off right up to the moment we went on air.

I guess the hard part is knowing what I left on the table for discussion. Yeah I'm pissed for the most part by the disability community's judgment of Ashley's parents but I didn't get to the crux of the matter. The folks I labeled "Nazis" paint this situation as black and white. If you don't agree with them then your opinion is wrong. Our feeling is that this situation is a bright shade of gray. Unless you have lived in Ashley's household for a very long time you have no business judging her parents. As I (think I) said everyone has a right to their opinion but to condemn these obviously wonderful parents like so many are doing sickens me to the core of my being. And it is particularly disturbing that much of the condemnation is coming from what I thought was a giant family whose members come together to rally for the benefit of our disabled loved ones.

As I said, I am exhausted. I will share more of the experience later in the weekend. Thanks to all of you that tuned in and at least appreciated my attempt to defend Ashley's folks.
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This is the transcript from Paula's website:

ZAHN: No one, of course, knows the challenge of caring for a disabled child better than the parents themselves. And you are about to meet a man who has some very strong feelings about that. Bennie Waddell is the father of 7-year-old Ben. He strongly supports the decision of Ashley's parents. He's even been in touch with them to offer his encouragement. And Bennie very much wanted us to meet Ben. So, they both join us tonight from Greenville, South Carolina. Delighted to have both of you join us tonight. Thank you.

BENNIE WADDELL, FATHER OF DISABLED SON: Thank you, Paula.

ZAHN: So, Bennie, among other things, you have heard Ashley's parents and the ethicists and doctors that made the decision described as child abusers, mutilators, evil, playing God. What is your response to that criticism?

WADDELL: I'm appalled, to be honest with you. When I first heard those terms, it really angered me to the core of all I am, the accusations that the parents were lazy, that they don't care for their child, that they are abusing their child. Having lived a similar journey, I think it is just a ridiculous -- they are just ridiculous accusations.

ZAHN: I know you feel very badly for Ashley's parent. But the disabled community seems very, very activated by this case. You saw close to a couple dozen people protest outside the American Medical Association offices. What did you make of their outrage that day, and what they want?

WADDELL: It's bothered -- well, it's bothered me a great deal. They -- you know, I think they're -- they wanted the American Medical Association to condemn the doctors for what they did. And it is just absolutely ridiculous for somebody in the disability community to go against, so strongly, one of our own. I consider Ashley's family to be part of my family, part of my -- my extended family. And that's how most of us feel that are raising these kids that have severe disabilities.

ZAHN: And I know, in your own blog, you have gone as far as calling some of these critics disability-rights Nazis, imbeciles, jerks, uneducated idiots.

WADDELL: Right.

ZAHN: They do have a right to express their opinion, though, don't they?

WADDELL: No doubt, but the way they are expressing their opinion, I think, is in a -- in a dirty, lowdown form. And, if they want to make accusations, in a sense, toward my family, toward Ashley's family, for making decisions for our children that we think is the best interests, well, I'm going to get down and dirty with them just as well.

ZAHN: And I know, Ben -- or, Bennie -- your son's disability is not all that similar to what Ashley confronted. But could you imagine ever having to face the choice that Ashley's parents have?

WADDELL: Well, we have faced a lot of choices like they have -- not as drastic, not as intrusive. But every day that Ben lives, every day that he has lived, we have faced choices that, as one of your quotes earlier from Ms. Cohen's piece, that we're playing God. Well, we do play God. It's an unfortunate side of this life, that, you know, do you do things like give Ben a trach? Do you give him a feeding tube? Do you buy him a pair of glasses? You know, all of these things are choices. And, very early on, we had a situation where we were offered the ability to give Ben hormone treatments to increase his size, because part of his syndrome is that he will be much smaller than the average-sized child.

ZAHN: And that is something that you opted not to do, after a great deal of thought. I know all of these choices are very, very personal. And we really appreciate your sharing your story with us tonight.

WADDELL: Well, thank you.

ZAHN: And -- and I would say Ben is a very lucky guy to have you as his father. Thank...

WADDELL: I'm lucky to have Ben.

ZAHN: Yes, I bet you are. Thanks again for joining us tonight.

8 comments:

Mete said...

I missed the live show, but read the transcript, and I thought you did a great job. It's hard to cover all of your ideas in such a short amount of time.

I have to say, thanks for being so open to speak out. I've been appalled by the comments of so many other parents. Bloggers I once respected and admired have shocked me with their cold portrayal of these parents. There is no compassion, no attempt to even try to understand another person's VERY DIFFERENT situation. I've lost respect for many of them who I thought I once understood.

I too thought we were a community, a family united by love for our kids and a goal of making their lives better. I'm starting to feel like an outsider because of my unpopular viewpoints, but I feel I must still defend myself and defend my son. Thank you for doing the same.

The Union said...

Hey Bennie,
I watched you and your son.
You were great. As soon as I heard from Mrs.Zahn that you have a blog, I went online to search for you! As an outsider, I totally agree with your saying that you have to play God here. That's your only choice, isn't it? No one can judge you or Ashley's parents but you YOURSELF! Cause you are the only one expriencing what you are experiencing
So good luck my friend in your journey and keep pursuing your happiness as you've been doing
Eaman from Michigan

Jacqui said...

I didn't see you on tv because I am in Australia. Are you able to link your site to the transcript when you get the chance. I'm sure you didn't do as badly as you think. It takes guts to speak out with the unpopular view. I admire you.

The Curmudgeon said...

And the transcript looks pretty good, too. I've saw the comments left by "connie" and you on my site and responded to both.

Hope you can decompress today.

T. said...

That is the nature of the television beast my friend. Perhaps I should have warned you. It is one of the reasons I left the industry.

Do not feel bad for not being able to offer the sound bite you wanted to. You simply did not have enough time.

However, the impact of seeing you and your family live, disagreeing with the irrational fervor of these zealots, is huge.

By standing up for Ashley's folks and saying "hey, wait a sec, you can't judge us until you have lived in our shoes..." is huge.

To some family out there who never thought much about disabled rights and advocacy, you gave them a different side to think about.

You gave them a choice. Merely by standing up and saying WAIT.

And for those who really are interested, they will find you and seek you out.

That my friend, is wonderful.

Good job.

But then, I knew you'd rock it.

Anonymous said...

Thank you for standing up for Ashley's folks. I have 4 children, one is 'special'. My husband and I have chosen to homeschool him, he is 13 now. In my local community everyone uses the public school services provided by the special education department. Our family choose not to use any of these services but to find them privately, we made our choice in the best interest of my entire family taking our son's needs & our family's lifestyle into account. We have been gossiped about & slandered by area parents who feel that by us making this choice for our child, we are somehow judging their choice as not the best one or that somehow we are ashamed of him and want to hide him at home. Nothing could be further from the truth. Every child and parent situation is unique, thank you for recognising that we as parents of disabled children need to be supportive of each other even when our choices are outside the norm.

dki617 said...

It seems to me like you've put an awful lot of pressure on yourself to be "just right" in this interview. Please rest assured that you got your point across. I thought you did a fine job.

It might behoove you to read the transcript and put another parent in your seat, saying your words. I wonder if you'd be as judgmental toward someone else as you're being to yourself.

And as far as us being a family (my daughter is disabled), try to remember that there are disagreements in some families. There are sometimes very judgmental people in families. Sometimes, there are people who don't like each other in families, and there are petty and not-so-petty fights in families.

And, from my perspective here on the sidelines, this was just a big ol' family brawl.

I wish you the best.

Ben & Bennie said...

dki617, you are so correct that I put so much pressure on myself. I think that stems from the fact that I am perhaps the first person other than someone in the medical community to stand up for Ashley's folks. I also appreciate your opinion about the family rift. I sure do hope that is all it amounts to be.

Anon, I hear you loud and clear. When one of us in "the family" makes a choice about the care of our child we need keep quiet and listen before we judge. Unless someone is making a child suffer I will not condemn their obvious well-though-out choices of care.