July 12, 2011

Rabbit, Run

("Black in White" by Luke Chueh)

Let us take a moment to consider the strange, sad story of how Marissa's Bunny lost its way.

If you want a pretty complete telling of the story, go check out a post on Love That Max. In particular, read the comments, because much of the story plays out there.

(Shannon Des Roches Rosa sums it up very nicely, too.)

The short version is this: Marissa's Bunny tells the story of little Marissa, born in 2007 with a pretty terrible condition called West syndrome, or "infantile spasms". The blog is written by her father, Mike Wuerthele, and over time has garnered quite a following. A lot of people care very deeply for Marissa.

Last year, Mike turned to that caring community for help. He said he needed to raise money for surgery for Marissa. Thanks to the generosity of people in the gaming and disability communities, Mike raised almost thirty thousand dollars. It strikes me that the folks who helped Mike were very similar to those who helped Schuyler get her speech device six years ago. I suspect that some of them WERE the same people.

Here's where things get murky. Mike announced that he was starting the Marissa's Bunny Foundation, and with matching funds from his employer (who wished to remain anonymous), parents of kids with special needs could apply to receive free iPads for their children. This application process included submitting a great deal of extremely personal information. Forty parents were selected, and they were overjoyed.

Well, of course they were. In addition to the great need being filled, things like this are rare for parents of kids with disabilities. Generosity and good news are like buried treasure to these families. Enthusiastic parents began making plans with their therapists and school teams to incorporate these iPads into their kids' treatment and curriculum. Then they waited; many were notified that their iPads had shipped.

You know where this is going, I know.

As of this writing, not a single family has received an iPad. Mike has given a number of different stories, about shipping errors and legal obstacles and even threats made against him and his family, causing him to stop any shipments at the advice of his lawyers. He offered to refund donations to anyone who asked, but then claimed that his access to PayPal had been restricted.  As more and more people compared notes, the extent to which Mike had been covering his tracks and telling outright lies became clear.

Finally, it all came down to this, an email sent yesterday to the "winners":

There are no longer any iPads. I've never had access to the matching funds I've been promised. Something along the way changed and I'm getting hung out to dry by my bosses.


As to my obliqueness about my bosses and the company I work for, If their identities ever got out, long ago they promised I'd lose my job, my insurance, and take us for everything we have making Marissa's surgery impossible to afford. If I keep my mouth shut and the fact that I got screwed never gets out in any way then I keep my job, and my insurance, and they've promised to pay for Marissa's surgery after we give everything we can.


My reputation is now screwed with the SN community but I have to be able to give Marissa the best chance for as close to normal as possible and will happily work under whatever conditions I need to. I'll dance with the Devil if it gets Marissa what she needs.


We're not going to fundraise any more. There won't be any more giveaways on Marissasbunny for special needs or otherwise. I'm still going to update with Marissa's surgical preps and that kind of thing, but that's all. Marissasbunny is going back to what it was before they got involved, back when many of you started reading. No more promotions, just Marissa and her brother's story.


There are the first words that are my own and not through a corporate lawyer since Thursday.


Regretfully,
-Mike

There will be aftershocks to this story, I'm sure, especially since a number of people have apparently contacted law enforcement. As of this writing, Mike has said that he will be personally giving an iPad to a single winner this afternoon, with photos and no doubt some balloons and bullshit-flavored cupcakes. But I think this story is mostly over.

So what happened here? Was it all a scam, and if it was, to what end? No one paid for an iPad or a raffle ticket, but apparently there were pleas for matching funds funds from Mike's apparently mustache-twirling, comic book villain bosses. That request raised about $4400, funds that have now simply disappeared, along with other money raised for various reasons during the promotion. And the Marissa's Bunny Foundation? Does not appear to exist at all.

Does Marissa herself exist? Did that original almost thirty grand actually help her receive needed surgery? I'm going to step on my swelling cynicism for a moment and say that yeah, I believe that Marissa probably does exist and that Mike's original plea for money was legit. If Mike is anything like Julie and I, he must have been astonished at the generosity of a bunch of strangers on the internet.

Perhaps that opened a door to a dark place for him, a sense that "If it was that easy, then maybe..." Or maybe he was so desperate to be someone's hero that he kept this going to feed on the accolades and the gratitude for the work he was doing. Work that we now can see he probably wasn't doing at all.

I guess there are some lessons to be learned here, beyond the old "trust but verify". After all, when Julie and I and a good friend did a fundraiser to help buy Schuyler her speech device, those of you who donated took it on faith that we were telling the truth. As much as I've welcomed the democratization of the AAC process that the iPad has potentially brought to our families, this might just be the flip side. When you look carefully at Mike's whole "Free iPads for special needs kids!!!" promotion, it fails the sniff test on multiple levels. A speech-language therapist might have picked up on that, because an SLP doesn't exist on scraps of hope like special needs parents do. Situations like this serve as a reminder that regardless of the product or the therapy, we need as much professional guidance as we can get.

For me, however, there's a larger lesson here, a reminder that there is an even greater equalizer at work. People talk about the disability community as if we all gather at the VFW hall on Fridays and approve the minutes from the last meeting while practicing our secret handshake. And those of us who live in this world are treated like saints. "God chose YOU for this very very very special job!"

But our reality is one of blind selection, one of the few truly equal experiences in the universe. A very fair unfairness, perhaps. Membership in this community is open to Kennedys and Palins alike. We celebrate writers like Rupert Isaacson, but we struggle to make sense of someone like Arthur Miller. Many of us talk about how we're not special, we are just doing what any parent would do for their child, but we know that many don't.

Most of all, we like to believe that our commonalities provide a kind of sanctuary, and that when we hear a story like Marissa's and we meet someone like her father, we believe we can trust them. Because to face the alternative, to admit that a father would see his broken, beautiful daughter as a device by which to cheat his fellow special needs parents? That's a bitter pill to swallow. And we've forced down a lot of bitter medicine already.

I have a confession to make now. Honestly, I hope that there is no Marissa, or at the very least that she's a distant niece of Mike's, or a neighbor's kid. I find myself hoping that this is a full-blown scam, an attempt by an outsider to swindle families of kids with disabilities.

Because as bad as that would be, I find it worlds more troubling to imagine such a cynical act being committed by one of our own.

26 comments:

Just Peachy Keen said...

That is unbelievable! Is this out there in the national media? I smell a big pile of opportunist BS with his 'story'.

Emma said...

Well said. At some moments I hope the same thing.

Laurel said...

Ugh. I am just sick at heart reading this (and the posts, and comments, you linked to). Sick to the stomach, too. Some of those comments were heartbreaking, like the little boy who cried himself to sleep after hearing he wasn't getting an iPad (just about enough to make me think about raiding my own savings.. except I can't afford to do so forty times over). And I keep on wondering about the little girl in the video: his, or not? Has he stolen someone else's child's story for three years, or is it really his girl's? As an outsider to the SN community, I can't decide which is worse.

But I wish all the best for Marissa, no matter who her father is, or perhaps in spite of it.

Shasta said...

Very well said. I was only vaguely aware of this campaign as it started just as I started blogging and so I figured it was normal to give away tons of iPads to SN kids, but it seemed weird.
It also makes me worry about the tarnish this will put on real fundraisers. I myself just raised over $1,000 for Malachi's extra-insurance coverage therapies and while most were from IRL friends a few were random Internet people. I would hate for them to think that I won't use the money for that purpose or, worse, ignore legitimate requests like mine in the future.
www.outrageousfortune.net

Ellen said...

Ah, Rob. Beautifully and sadly said. The undelivered iPads situation has been painful for all involved, including bloggers like me who have supported Mike's giveaways and donated money. I don't have answers. I am desperately hoping for resolution to this—that somehow all of these parents do get their iPads, that what has really gone down here is one day revealed. And that Marissa, who I can't stop thinking about, is OK.

Jackie said...

There are a few things even in that first post you linked to, introducing us to Marissa and her Bunny that to me, don't pass the "sniff test". I don't want to drag a good man through the mud, but at this point, I don't know that I believe he is a good man. I hope that with all the complaints, there is a real investigation and the truth comes out in the end. I just hope no one else gets hurt in the process.

kris said...

This is so sad.
As I said on your facebook earlier today, the thing that breaks my heart is that this scam may make it more difficult for kids and families with their own monsters in the future. Will the next Schuyler be able to get people to pitch in for his/her BBoW?

Bev Sykes said...

Have you read Armistead Maupin's "The Night Whisperer," which is a fictionalized account of his real interaction with such a scam? I read both his book and the book which spawned the scam (the name of which I've forgotten).

It is stomach-turning that people can do this to good-hearted people who only want to help and see this as a real way of doing so.

There was never any doubt about YOU because we knew you since before Schuyler was born, and watched videos of her and read your entries as your fears began to surface. No doubt whatsoever, and no regrets either.

Sabrina said...

Rob, I read the post about Marissa's Bunny on Love That Max and your comment there as well. I have no vested interest in the situation whatsoever but it does truly bother me that something like this could happen. I would hate to think that Mike is scamming people, but I can totally understand why people would be up in arms over this. So heartbreaking...

Shannon said...

What a fucking mess. And is this guy EVEN serious with ''anonymous'' bosses and shadowy ''other people'' who continually drop the ball?

Way to play on the hopes of a community that pretty well exists on HOPE and steal it without a care or any likely consequence.

Homer said...

I think I may be seeing this differently. I think this is a guy who is trying to help his daughter and will do anything he can to that end.

"I'll dance with the Devil if it gets Marissa what she needs."

Elizabeth said...

Great post, Rob, as always. As someone who was "in the know" quite early on with this scam, I'm just shaking my head at this point. I hosted Marissa's bunny Fairfax some years ago -- the whole thing is weird, weird, weird. I'm finding the hoopla about it -- the comments, the crying children, the almost crass commercialism, the grappling -- a little disturbing, too.

Emma said...

He probably was only thinking of himself/his family but the anger is that this was done at the expense of other disabled kids. A full and careful review of his emails (most of which I have saved)reveals many contradictons which indicates an intent to stall and mislead.

I doubt we will ever know the "truth" but I hope that we don't allow the bitterness to cause us to attack each other.

Laurel said...

(Yes, after the recent update I wonder about whether the crying child is part of the scam as well, then?)

teamaidan said...

As someone who raised 40k for an accessible van for my son, this makes me so sad and scared that people may shut down in fear. Then again, since there are many stories like mine, there's reason to believe people are still hopeful and generous. I choose to dwell on that.

Jenny said...

I'm also troubled by the idea someone with a special needs child would take advantage of parents in the same boat.

The whole thing is upsetting and sad.

Kim said...

I wonder if this Mike perhaps had every intent of giving the iPads away but did so on a vague or even non-existent promise from his employee. That would explain the enforced anonymity if he hadn't actually secured an agreement. Perhaps his employer had suggested a possibility that he blew up into a full-blown promise in the excitement? I know that there are real jerks out there and plenty of them, but my experience in life (for what it's worth) has been typically that folks are rarely all-out evil and that there exists an explanation that on some level makes sense from their perspective (it sounds like you're affording him the same shot at innocence, btw, lest my comment be misconstrued).

Regardless, your post gets at something that I've thought about for a long time, not just for the special needs community (though in some sense it is felt there more acutely when the possibility of deceit is introduced in a very real and in-your-face kind of way). We're moving toward an increasingly digital world and the ability to verify and vet that world and the elements within is shifting and in some cases disappearing. The folks who know how to play this world often leave nary a trace of their deception.

Anyhow, I'm rambling... much love to your family and thanks for a great blog.

Matthew said...

Great Blog, great writing and your even local. Will read more often.

Apps for Children with Special Needs said...

There is a lot being said about this terrible incident and I agree that if this is a SCAM, then he needs to be prosecuted to the highest level. Simple as that.

This upsets me because I actually am trying to do similar things for our community and it is going quite well, by the end of July 20 people will have received their iPads from me.

I am a father of 6, 2 with Special needs and have given away over 6000 Apps also in the past 3 months to special needs families. Just in the past 2 days I gave away over $2500 worth of Apps.

I intend to give 1 Child with Special Needs an iPad in every state.

If you want to see how amazing and uplifting this process really is, come on over and join us on our facebook page or our website, you will see it is all about Special Needs and our Children.

Gary@a4cwsn.com is my email
203-305-3829 is my personal Cell

www.a4cwsn.com is my website
www.facebook.com/a4cwsn is our community of almost 4000 Special Needs people.

Let me help you if I can.

Asparagirl said...

Rob, are you familiar with the story of "Kaycee Nicole"?

https://secure.wikimedia.org/wikipedia/en/wiki/Kaycee_Nicole

How about "Alexa DiCarlo"?

http://www.metafilter.com/97840/oh-no-fauxho

I don't think Marissa exists.

Susan Oloier said...

I have to agree with you. I hope there is no Marissa either.

And, by the way, I hate it when people tell me I have been chosen specifically to be the mother of a child with global disabilities. Yes, I love my son tremendously. But seriously?

little.birdy said...

This has nothing to do with anything, really, that you posted, but I wanted to thank you for posting about Schuyler using the sweatbands on her wrists to manage her drooling. I used the idea with a student of mine (I'm a speech therapist) who has more cognitive issues than Schuyler, and it's working beautifully! I think the students likes the feel of the cloth on her lips, and it encourages her to wipe her mouth independently. Where does Schuyler get hers? I want to try it with some more students this fall and I LOVE Schuyler's tastes.

Maggie World said...

Thank you for an excellent explanation and commentary on this whole mess. I never addressed this in my blog because I was not taken in by it and never was asked for or donated a cent of money. I submitted a request for a free IPAD, and did boost the signal a bit when the IPAD thing was supposedly happenning. I never heard anything and presumed I had not been chosen, but in my complacence I didn't check back. It was only when I saw lots of hits on my blog searching for Marissa's Bunny Scam that I started snooping around. I've read various accounts and tons of comments and pieced the story together, but I still wasn't sure what to believe. I don't have a relationship with "Mike" or with 99% of the commenters. After reading your piece, I finally see the whole thing laid out in one place. It's so very sad.

I too hope Marissa doesn't exist or at least isn't his daughter. She needs a better dad than that.

Amy Caraballo said...

It sounds like this scammer has hit again under the premise of a4cwsn.com. Though he seems to have parents who claim to have received Ipads, most have not and were banned from his group. He's even commented on this blog! Same MO. Sad.

Teri said...

I am a parent of a child with Special Needs that received an Ipad from A4cwsn. I dont know what all the drama is about but I can say that my child is using his Ipad along with his ABA therapists to help him have a voice!

Matt Duvall said...

has anyone actually seen a picture of Mike Wuerthele...my mom told me about Marissa's Bunny and I've been trying to find a picture of him...

The thing is...I'm his son Matthew Wuerthtele

It would be nice to actually have seen my father once