11:40 AM

Is it awareness or just plain creepy?

Yesterday another albinism mom notified me that a photo of my daughter had been taken from this blog and posted on a photo sharing site.  It has since been re blogged over 4000 times.  This was mind boggling to me.  To this date my daughter's face is appearing on 4000 websites and growing every day.  In the small blessings category all of the comments have been about how stunning and cute she is.  I still am feeling violated.

I know she is amazing to look at and adorable and memorable, but the fact that photos of my son who is just as cute are still only on this one site make me feel uncomfortable.  This is not about being a cute baby, it's that she is a "sight" and "oddity" an extremely cute one, yet still something people feel the need to single out because of her difference.  There were also a lot of comments about how they had "never seen such a thing", "did not know this existed".  Part of me was thinking how amazing it is that all these people now know a tiny bit more about the face of albinism.  A bigger part of me wanted to take my baby, hide in a closet and delete this blog.  I feel like I have really opened her up to a global level of scrutiny that I did not anticipate.  I thought we would only be found by people who were thinking about special needs adoption and who would be happy and thankful to learn about my girl, people who would be respectful and a part of our community.  I am so naive.  I just did not think my little blog of 18 followers could fall into the wrong hands.  But it has.

So here is the issue, according to google analytics about 21 blog hits have come from people who want to know more about albinism adoption.  That is a pretty small portion of the total hits.  In the past I thought that it was a great number.  What if just 10 of those folks decided they could manage this special need because of our story?  That would be fantastic!  Now though I wonder is are those little amount of people finding us worth violating my daughter's privacy?

In China every where we went Elora was oogled at.  I am not sure I really talked about it in detail at the time.  It was really hard.  It's a cultural difference, but they were invading her personal space, wanting to touch her hair, pointing and poking, taking her hat off.  Most of the time she was in the carrier and we were able to keep the on lookers at bay, but once when she was ridding in the stroller at the zoo, she got swarmed by a huge crowd all taking her photo at the same time.  People took her photo every single step we took, sometimes they would ask some times they would be sneaky about it.  I am pretty sure those photos are circulating the web too.  Once we were home our small town folk mostly just think she is Caucasian and though her hair gets many compliments it seems more normal to me.  Emery was a flirt of a baby and also was stopped daily for being so cute.  I had come to feel like that feeling of being stalked and being a spectacle was behind us.  Turns out western culture has the same base interest as the Asian.  The difference being that in public westerners will feel it is impolite to stare or draw attention.  All of that politeness melts away in the anonymity of the internet.

Lesson learned.  I feel like I have new empathy for Suri Cruise.  This really feels crappy to not be able to control who sees your child and even worse what they want to say about her.  The result is that this blog may be coming to an end.  I am going to take some time to think about it.  To think of the ethics and weigh the benefits and risks.  The one thing that keeps weighing on me is that finding an albinism blog was a MAJOR factor that helped us as a family choose this need.  With out these other bloggers in my community I can say for certain that Elora would not be in our life.  That is a heavy thought, and I feel the need to pay it forward very strongly.

6 comments:

Mandy said...

I found your blog through someone else who posted that you guys were traveling and asked for encouragement and prayer for you. I drop by every once in a while now. We are filling out the homestudy paperwork, deciding which special needs are for us. I'll be honest, I dont know that I would have been open to albinism without you. I also like that you are 'real' about the difficulties with bringing home a SN child. Thank you for that. You have helped me to have a much more accurate view of adoptions and the side that isn't all 'rainbows and sunshine.' Plus - that sunglasses tip with the hair elastic chain has been awesome for our toddler! Lol.
On another note - can you watermark your photos on the blog? It can't help undo what has been done, but will it prevent future photos from being taken without permission? Just a thought...

Thompson's Journey said...

I hope you keep blogging. I have learned so much from you. You could take all photo's off!

Missy said...

Please email me.. I can offer you insights on this. I'm crushes that someone violated your privacy in this way. So very wrong.

Kim and Dennis said...

We have been home with our daughter for one week. I got your blog from the BaiChina group and love it! You have answered several questions that I had. Please keep blogging.

Sara said...

Wow..that really hurts. Your daughter is truly beautiful! I'm just so sorry that this has happened to you and her. Take care. We will support you in whatever decision you make, although I must admit that reading about your trip to China really helped me to know what to expect when we went. It was not all "smiles and roses"... you said it like it is. Maybe you could try adding a password whereby people have to email you to get the p/w before entering your site. In this way you could explain your purpose of the site and hopefully avoid oglers, but still help adoptive parents. I have to admit that this is one thing that scares me about blogging... the what ifs.. what if my kids' photos were deranged by some weirdo etc.

I agree with Mandy that watermarking your photos might be helpful.

Sara
Sara

Scott and Jane said...

I'm so glad you haven't ended your blog. Because you posted this week I have now stumbled across it. My husband and I are in the process of adopting a daughter with Albinism and I have been "stalking" your blog all afternoon. I have found it to be soooo helpful! And I appreciate your honesty, it's helping us to keep that realistic dream of our future with our child. Your daughter is stunning and your pictures make me look that much more forward to meeting our little girl in person.