A growing, yet fractured, community
I’ve talked about the special needs world during public speeches and here on this site regarding a constantly changing face of the community. Social networking is a huge reason why so many more families and members of the special needs world can connect with each other. I have learned SO much from so many other parents and special needs adults. I wouldn’t be the advocate I am today without social networking.
But there’s another side of it. It’s not very pretty. It’s a side where some people think it’s fun to abuse the respect and kindness that is easy to make in an online world when you may not see every person face to face. Heck, those avatars and photo albums may not be who that person says he or she really is. We all crave the ability to connect, but we also fear anyone who might be suspicious. I analyze each person who “likes” Born Just Right on Facebook. If I see red flags, I don’t allow that person to participate with the page. I rarely block people. But I’m not afraid to protect my community.
The ugly side of social networking means as a parent, I’m constantly questioning who is talking to me. I constantly analyze conversations from afar inside the special needs world and assess if that person or organization is real. It isn’t always easy to be sure. That’s because new groups and pages and conversations are popping up across so many different communication tools. That’s not unusual. The challenge is I personally feel the need to join them all just to make sure I can offer knowledge. For some reason, I hate knowing a parent or a child is growing up with information that may lead them into a direction where he or she might not feel comfortable in his or her environment. I feel like I’ve spent a lot of time connecting with supportive organizations. I’ve learned a lot of lessons along the way with my child. And I feel like I’ve built a really knowledgeable support source so when I come up against a challenge I’ve never faced, I probably know someone who has the answer. Maybe it’s my journalism background, but I hate it when misinformation is considered correct. This year I decided I needed to stop feeling like I have to inform every conversation I find that is misinformed… But when I can, I offer to help.
Every once and a while someone pops up in the limb difference communities who seems pushy or opinionated and not open to different perspectives. It’s hard to watch. But it’s really hard when anger is the response to logic. That’s what has happened this week after a new Facebook group appeared a week or two ago that focuses on limb differences. Hundreds of parents of limb different kids and limb different adults joined. It seemed fun to share photos. But then concerns came up… And a quiet murmur of concern rolled along in private conversations online. It’s an uncomfortable process. But it’s also challenging to know how to handle something like this when there are so many tiny groups and pages emerging online. I wonder if there’s any way to create a centralized hub… while all parents can feel comfortable to build the type of support and networks they want. I try to keep track of blogs on this site and share groups and organizations that are interesting and supportive on the Facebook page. But I have really no idea if I’ve found and interacted with them all. It’s kind of a crap shoot. Hopefully you join an informed organization that is full of people with all kinds of perspectives: families that have prosthetics and those who do not, families that work with physical and occupational therapy, families that haven’t decided what to do and others who are focused on specific goals… Adults who have been there and done that. I could never tell any parent how to raise their limb different child. I’m still figuring it out myself. (And I expect I always will.) But I do want to say that I hope I can continue to keep an eye on the community. I care about it a lot. And I hope we can all band together and continue to help each other out any time something appears inappropriate.
That is why I don’t blog anymore. 🙁
And I was just thinking about you because we had a very interesting conversation/confrontation with my son who happens to be LBE because he has decided to start putting down members of his family. He keeps calling us all fat and ugly amongst other choice words. 🙁 It is not in the heat of the moment. He just randomly insults us apropos of what seems to be nothing. It’s very hurtful especially to his older brother who is neither of those things and doesn’t appreciate being called such. We have handled it, at least I think we have. We had a very big, very honest talk in the car yesterday. Anyway, I feel our family still has a story to tell but I don’t feel comfortable doing so on any kind of public forum.
It’s so dang hard. I have discussed this multiple times with my family and we feel we have been telling our story for so long and I spend a lot of time watching through search and group activities to see if anything inappropriate is taking place. I’m doing the best we can but I also feel the people we’ve been able to reach makes this incredibly important. If someone steals and tries to use Jordan’s image to represent some other child, I am pretty sure the limb difference world would know who she really is and call that person out pretty quickly.
As for name calling – I’ve found Jordan to be the worst at staring and pointing. It’s led to some big conversations about awareness and differences. She’s so unconscious of her difference that she is still stunned like so many other children about differences. It’s fascinating (and telling of what it’s like to be six years old… she’s just traditionally self centered!)
I love your blog. My little Braeden man loves seeing pictures of “the girl with the hand like mine!” I also get nervous with all the devotees and other people out there who try to take advantage of kindness because it truly has been a blessing in disguise to have braeden and meet so many like minded people as myself. I really do want to treat people with kindness and compassion but when that kindness and compassion turns into just anger, and not logic I too get frustrated. I am pregnant so the hormones are a flowin’ and I said some not so nice things back, but I can take fault in my own actions. I am more than willing to help or answer questions where I can, and this is a non stop learning situation for us too.
I was very excited about this group, but no one really knows who this girl is and I think there is a certain amount of trust that needs to be built within the community before you just start a page. I think she does seem somewhat legit, maybe a little misinformed, but I knew nothing for most of Braeden’s first year because we had no groups in our area, so I can see her side of things too. But the anger, thats what makes me frustrated is that I really just want to help and instead there is a wall….
You’re right about anger. It doesn’t help. I had very few support sources when Jordan was born six and a half years ago. That’s why I kept the Born Just Right page going when she was little. Braeden is lucky to have a mommy who wants to learn and share. It’s the most wonderful part of being a parent in the special needs world. We really can lean on each other when respect and cool heads prevail.
Apparently, I missed the blog being discussed?
Never mind…I don’t want to know. 😉
Jen, I wish you lived closer. Maybe you could email me sometime and we could chat. As my son gets older, I find myself celebrating his accomplishments as well as groaning over his “challenging” but lovable personality.
I am glad to know I am not alone.
Oh Jen, how I feel you on this one. I’m struggling right now with a few things that lead back to this very discussion…
It’s not fun. If I can help in any way, please let me know.