Scott,
If they are disturbing to us, imagine how the kid will feel when he/she sees their agony on the Internet for the world to see.

That’s why I stay away from Steven Seagal movies. “crunch and crack”

Not to be rude to the parents but if parents are going to rely on the media for their choices then we are in deep trouble all over the world. I think parents should use common sense and ask themselves if they would like all of this exposure done to them.

I asked Amanda if we should volunteer at the next OIF conference but perhaps there is more we can do in the meantime. Do you have any suggestions? Thanks for your very thorough and thoughtful response. 😀

Amanda,
Perhaps it’s up to us to educate the parents since we are already adults and understand the ramifications and the limitations of our disability. I agree with your pity comment. We also have the parents that coddle their children so much that the child never really explores his/her abilities without fear of a fracture. While we all avoid pain, we don’t all avoid living life to the fullest.
Should we volunteer ourselves at the next OIF conference to help the parents?

Some parent bloggers seem to manage balance whatever their need for blogging about their child is (whether it’s to get support from other bloggers, to act as support for others, to provide information, to be an advocate, etcetera) with privacy concerns for the child VERY well.

Others don’t do it so well. I think that learning to balance these things is a skill, and I wish that there were more resources for parent bloggers that could learn to help them to do it effectively, for the sake of the children involved, especially if pictures are being posted.

One of the issues as I see it is that the media doesn’t provide good examples of portraying the stories of disabled people with dignity. Here in Canada, a piece called “Forever Child” about a family’s struggle to get supports for their intellectually disabled son (an adult) appeared on a national news show…the segment showed a shot of him being dressed by a caregiver (including a shot of his adult Depends on the bathroom floor), and he was present for an interview with the mother about how difficult his disabilities made his life for her. That went out to the whole country. If he consented to being depicted with that level of indignity, I wonder if he truly understood the ramifications.

And isn’t what this issue with the social media comes down to? That even if these children say, “Okay, you can use me in your blog,” do they really understand that once something’s out on the Internet, you can’t get it back?

Great article. Very thought-provoking.