What is your opinion on social media posting of videos, photos and stories that involve an adult with cognitive impairment?
I'd like an opinion from those of you in the care-giving trenches about whether or not you think it's "ok" to include people with cognitive impairment and anyone else with consent limiting conditions, in your online postings.
This is why I'm wondering. Pops has always been a ham. Even before his brain injury he loved to be goofy in videos, photos etc. As with most of his strongest personality traits this has only been amplified by his cognitive impairment. Pull out a camera and he lights up. He loves to be the center of attention. He loves to see videos of himself being silly and will hop on stage to do very bad versions of karaoke etc. It gives him joy. Our adult children sometimes post videos with him in them on social media. I don't try to stop them. They aren't hurting anyone by doing so. I generally only post photos, videos etc with the consent of those in them and tend to blur out or otherwise obscure photos of my grandbaby who is too young to consent. As to pops, I generally don't use his name, personal details, or even his photo online and I have mixed feelings about doing so. It's not that I think it's wrong or right to do so, it's just that I'm still deciding how I feel about it.
However, I'm starting a YouTube Channel and plan to put videos of our travels with Pops and other family members on it. Blurring his face out of every single moment of every video would be a lot of work and defeat the purpose of the videos showing family. It also seems cruel to remove him from the videos, knowing how much he loves to be the star of the show. The audience will primarily be our own family who have chosen to be in the videos. However, I'm well aware that one can't control the audience when something is posted online no matter how careful one is. Some of these videos may be helpful to others traveling with a loved one who is cognitively impaired too. I'm aware of what the laws allow, I'm aware of what his doctors tell me will work for him, and I'm very well aware of Pops needs, what gives him pleasure, and what his limits are. I'm not looking for answers about stuff like that. I'm just interested in your personal opinions.
Basically, a personal opinion, from your heart, about social medial posting is appreciated.
Thanks,
(I'm putting this under Senior Activities because there is not a "social media and seniors" topic that I can find.)
9 Answers
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If you're going to make your videos available to the plublic, you’ll have to be prepared for trolls and people who are just Pure D mean and have no social filters. These people will post nasty and derogatory comments just for the reaction they will get from others. They thrive on negativity.
If Pops enjoys seeing himself performing, go ahead and post those videos. Just be prepared.
You are obviously savvy about what information should not be included, so no one is being put at risk.
We traveled with our Pastor and his daughter, she took it upon herself to not only post our pictures, but used our full names with our location and how long our trip was to be. She just didn't understand what the problem was. WHAT!?!? We were adamant about removing every reference to us. To do this not knowing how we felt and to put us at risk was completely out of line.
We don't use social media postings like utube or 2face book, to much drama for us.
However, I am super glad that others do. Fun entertainment.
That is my personal opinion.
Talked to my daughter about it telling her how private stuff should remain private. My daughter has now stopped posting this sort of thing. We will see if it stays stopped now that they are on spring break with both sets of kids.
My son-in-law does the same, actually it is his new squeeze that posts stuff that just over the top gushiness. I am ready to unfriend him because of all of this.
If it is a group of people, then even one not agreeing would stop it.
If you want to share these videos with family only you could setup a Facebook group that only members of the group can view. But, I certainly would not trust FB.
If you want to share what about a Dropbox account? You can then invite those you want to be able to view what is in the box. They in turn could make deposits to the box. There are also picture sharing sites that can be shared with a specific audience, like Flickr and Photobucket, don't know if they work with video, but there must be something similar for videos.
Course with any of these options there is still risk of getting hacked and them being shared far and wide.
My sharing on social media options are limited due to the policies of some of the popular sites. Facebook isn't an option as I will likely never have another account there. I don't agree with their terms, so I don't use them. I've never heard of Flickr but will look into it. I closed my photobucket when their policies changed. YouTube has the best terms I've found online so far, with various privacy settings available. My Wordpress blog also has pretty good terms, however, it's really pricey if wanting to upload videos. As you said, none of them are without risk when sharing. Things shared privately can be accessed by anyone with the proper skills and determination. Dropbox is an absolute No for me, again it's a terms thing. Haha, even email has it's pitfalls and security issues. Anyone who actually reads what's in all those TOS and privacy addendums, as I do, knows that posting anything, even just putting it on your own phone or home computer and never uploading to the internet at all, is to make it available to the world. Your home computer is legally completely open to every single app on it that puts the access in the small print. Nearly every app on your phone or home computer now comes with the right to access all your data, photos and videos even the ones you don't upload. After a recent update I noticed that even my calculator app had changed the rights to include access to my contacts. I shut that app down but you see what I mean. I'm not concerned about security because I've had enough experience with digital medium to know that there is none.
What is your purpose in posting videos about your LO with cognitive decline. Ask yourself, honestly. First question is can that person, the subject of video, consent? If not no.
Are you trying to show how hard this is? On whom? You? Your LO?
BUT again, can they consent to signing legal documents at this point? If not, there you have it. My opinion is you are exploiting if they cannot consent. And at some point they won't be able to.
I did professional audio/visual production for years and by law we had to put a big poster board up, every entrance and walkway, where anyone coming into our camera lens could see, that they were being videotaped and entering was giving permission to use their likeness. Most people thought it was a hoot, those that didn't went around.
My point is everyone is posting stuff that has people that don't even know they are being recorded.
Pops playing the silly shows he knows he is being recorded and it is understood that it will be played back, he watches the videos, equals understanding to the best of his ability.
Anyone think Terry Shivo knew the news was recording her and showing the entire world?
Fairiefires, I think that you have a great idea that could help others feel less frightened about taking a loved one out and about, and provide information on how to deal with situations that would otherwise be a live and learn.
Being POA gives anyone the authority to do for us as we would have done for ourselves. Hams love, love, love cameras.
I would love to see some. I can always use a good laugh.
There are things we have to bear in life. All by ourselves. There's no,pep squad, save for this forum. There's no audience online, you poor thing.
Casting no aspersions. Sometimes you bear it singularly.
And I am wearing my pearls with gusto!
You did not find a Go Fund me of me. ;P They take like 20% of the money and if I'm going begging I want to keep allllllll that lovely cash for myself. Bwah ha ha It must take some serious guts to do something like that.
If I ever got really desperate for cash, I'd be more likely to sell myself in old lady porn than I would be to set up a go fund me account.