On blogging, autism/special needs, community and trust

For those in the special needs blogging community, the name Jess conjures up only one image. The image of the author of Diary of a Mom. Jess’ daughter Brooke (she uses aliases on her site) was diagnosed with autism and her journey has been chronicled on her blog. Jess’ blog has been very encouraging to me as the mother of a daughter, not a son, with autism. Her approach is almost enviable and I find her to be a very kindred spirit.

So, as both a writer and a mother, I was more than a little, shall we say roiled, when I saw this. I could barely believe what I was reading but kept nodding in agreement. When we put ourselves, our children, our lives out there, they aren’t only out there for public consumption: they’re there for the taking, for the stealing. That someone would so blatantly take her story word for word and change it to fit themselves then publish it in an attempt to garner attention and raise funds is sickening. I believe what most upset me in her entire piece was this:

I don’t know what to do with all of this. My work is copyrighted, of course, so I suppose I could exercise my legal right to, well, whatever. But it’s just not the point. The woman who claimed my work as her own had it up, until last night, on a site that solicits donations for a 501(c)3 foundation that she runs, in her son’s name, to support families in her area who need help providing resources for an autistic family member. I hope to God it’s real. That this incident isn’t indicative, as one would automatically assume, of a broad lack of integrity, but of a momentary lapse in judgment, of which we are all, to some degree or another, capable. I want to believe that. That it’s possible that she really is doing the good she claims to be doing. I don’t know how many of you have been around long enough to remember Marissa’a Bunny, but those were bleak times for our community. As Ellen at Love that Max put it at the time, “Promises have gone unfulfilled, accusations are flying, curtains are being looked behind. It’s troubling, especially in a community that’s centered around trust, caring, goodwill and doing good.”

Do people invent personas and children online with special needs and solicit funds? You bet your bitty they do. I do urge you to go and read the Love that Max piece on Marissa’s Bunny. Although nothing was ever conclusively proven from what I can tell and remember of that time, you can see in the comments exactly what Jess is talking about when she says “bleak times.” This incident severely divided many in the special needs community between those who thought there was a conspiracy/scam to those who felt things were over-promised to those who became staunch defenders of the Marissa’s Bunny camp. And you can see how the mistrust and anger was easily spread.

When something like either of these incidences happen and trust is broken, it’s not just bad. It’s deadly. Especially when charitable organizations are tied in one way or another. It poisons the well we all drink from: our community. The community that cheers on our kids’ successes and supports us through rough times, it disintegrates when things like this happen. People feel compelled to choose sides even when they really don’t want to. And then imagine you are someone on the outside. Someone who knows no one with special needs. It poisons you too as you may or may not understand the situation and regardless of understanding, will make judgments.

And who gets hurt most in all of this? Our children. People no longer want to make donations to reputable organizations because of the bad ones. People no longer want to hear or believe valid stories of suffering and need because of people who abuse and work the system. And people like me no longer want to share experiences or stories for fear someone will claim them as their own and manipulate others with them, damaging my credibility and my child’s need in the process.

I guess I should also state here, I’m not just an outraged bystander, it’s happened to me. Not in the huge, dramatic way it’s happening to Jess right now, but a “friend” who also had special needs children stole many of my status updates and even descriptions under my pictures on facebook and attributed them to herself and used them to garner attention and sympathy. At the time, I let it go, but later learned this person had several inconsistencies in her personal history as it was shared with myself and others as well. Not to mention a history of defrauding therapists and others for their services. So, yeah, this hits kind of close to home.

The kind of trust broken for me personally has made me leery of people in general when it comes to sharing our struggles and joys. And I’ve been doing it, but doing it less and less.

Like Jess, I’m never sure how to proceed when these type of things happen. I’m upset, I’m angry and I’m so over it. And while I am trusting that God will make all wrongs right, in the mean time, I’m not going to be too open or outright where Joe Internet is concerned which is a real shame. The community needs more positive and hopeful voices like mine and we’re all  starting to clam up.

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