Cousins disabled child on social media

[sunshine244]

My cousins son is 12 and has a variety of neurodevelopmental conditions plus another health condition (all quite well known conditions in case that is relevant).

A couple of years ago my cousin set up social media accounts on Facebook and Instagram about their son. He since started playing football at local level for a disability team. The accounts focus on his disabilities and health conditions and increasingly his football. My cousin is hoping he will end up as a famous disabled athlete. She regularly contacts the papers about him etc and has tentatively started looking for sponsorship.

I haven't said anything about it yet but I do have concerns. When he goes into hospital there is a blow by blow account of what's happening. Lots of private medical info being shared. Comments on very personal things like the effect of puberty, anxiety etc. The account is set to private but has hundreds of followers because she promotes it and accepts all followers.

I love my nephew and am really proud of him, but I'm also concerned about so much personal info and photos being shared. He is clever but emotionally way behind his age so although he obviously knows this is happening I'm not sure he's old enough to give an informed view. Also concerned that he grows up thinking his disabilities are all that people care about.

Yabu - don't say anything because its great to spread awareness

Yanbu - tactfully try and suggest to reduce the level of private info shared

I don't think there is any way to raise this that won't be upsetting, so I'd leave it.

But I do think he deserves the dignity of privacy

It isn't really your business really, but i agree. you don't have to approve or interact with the accounts though.

I am a disabled adult and really am astounded by the amount of parents who think it is fine to share their kids medical information online in the name of awareness, i would have hated if my parents did this.

YANBU - but, I probably wouldn’t get involved though.

I agree though that there is far too much sharing of this kind of ‘content’ when the subject can’t really be considered to have consented to it.

He’s a child . She should wait until he can make his own mind up about what is shared , if anything .

Fwiw i am not "ashamed" or embaressed about my medical condition.

You are right that children, especially the most vulnerable, shouldn’t be spread all over social media, but it doesn’t sound like a tactful suggestion is likely to change anything except cause an argument.

It's a tough one.

There's no way your cousin won't know the risks of putting her child online like that.

I absolutely get why, she will feel as though she's raising awareness, and getting some much needed support, as being the parent of a child with disabilities can be a bloody lonely place to be.

Your nephew(?) deserves privacy and dignity, but he is also consenting to this information being shared, and she obviously feels he is capable of consenting to it.

Ultimately there's nothing you can do, and if you piss her off she will likely remove you as a follower so you can't see what's going on.

What's her parents thoughts? Might be better coming from them.

I would be concerned but it depends how close you are to your cousin and what she is like personality wise.

Is she likely to listen or take offense?

Do you think raising it would actually make her think more carefully about it and ultimately help, or is it more likely to just cause friction between you?

If it's not going to actually change things then there is no point.

There's a creator on Instagram called Nina Tame (nina_tame) who produces excellent content about privacy and boundaries on medical information and children's right to privacy. It might be worth OP having a look at this to get some tips on how to discuss this with the cousin.

The issue of a consent is a big one, especially where children are concerned. I personally struggle with children's medical stuff being shared on social media (especially when it relates to things like continence or public meltdowns etc), even when it's done with the intent of being "educational" - I know there are always people in the comments saying they feel validated by the content, but it doesn't sit right with me (I speak as the parent of an adult disabled child. I have learnt to always ask for their consent when I speak about them or for them)

There will come a time when these children are adults and may not want future partners or employers to know their personal medical information, and once something is on the internet, it's potentially there forever, no-one knows who might be screen shotting or recording their content. And that's before you consider the minutae of the families' lives being dissected on sites like Tattle Life.

This is part of why I struggle with it. He shouldn't be ashamed about his disability. But when he's 20 and looking for a job will he really want to have posts up about how he had a big meltdown at football due to puberty starting?

Good point - he's not really my nephew, but I've always called him that because we see each other so often. Honorary nephew i suppose.

Cousins parents aren't happy about it but don't really use social media so don't see most of it.

Not your child, not your business.

I wouldn’t do it myself but it’s really the parents decision.. they’ve decided that they want to do it so you giving your opinion is only going to strain relationships and won’t change anything.

Neither of your options. What's she's doing isn't okay but you having a tactful word is highly unlikely to work.

We need laws preventing social media exploitation of minors or those unable to consent, but that's a minefield no politician wants to touch.

I don't think it's ok but I don't really know how I'd raise it without it causing a massive fall out.
I think celebrating his footballing achievements is fine and some of the difficulties his disability brings. It can help to raise awareness.
But details of medical procedures, meltdowns, puberty and anxiety are private and should be kept so.
I think there needs to be a wider discussion about social media and consent for under 18s. Parents shouldn't be putting stuff like that online without the child's consent and at the same time they can't consent because they are too young to understand the implications and make an informed decision.

YANBU However I feel it's not really your place to mention it.It sounds pretty damn tough for her.She is probably feeling empowered by hopes of him being a paralympian in future years.And by sharing its helping her cope with it day to day

You can stop following his account and if asked you can just say you stopped following accounts where the content is about children after seeing some disasters and finding out more about the dangers, etc.

You could make a fake account and message her saying how inappropriate her posts are

Is your nephew ok with it? Does he even know about it or is it solely for your cousin to post about his disability?
He shouldn't be having his every move posted for all to see, and at 12, while puberty is kicking in, I would think he would be highly embarrassed at having it all on Instagram.
Youngsters need privacy and more so at puberty.
I would say something to your cousin and remind her he is a human being and not her puppet

It certainly wouldn't be my choice and I say that as the parent of an adult disabled son who would be unable to give informed consent. But I do share updates, photos etc with select family members and friends privately so you could criticise me for that because he's not consented. What I mean is, we all walk a fine line and what feels right for one parent may not feel right for another.

While I don't disagree with your view, I don't think it's your place to say anything to your cousin. It's unlikely to have the outcome you want and would probably cause a rift between the two of you.

Saying something about it will not change her mind. It wouldn’t be my idea of normal life having everything online but many enjoy it.

Ask any parent if they're protective of their children and most will say yes of course.

However, when you point out that publishing their DC's photos, stories and details on the internet is anything but protecting them and the excuses will start.

"Oh but aunt Mable in Maui wants to see how they're doing" or "But I know every single person on my SM accounts really well" etc.

The truth is, they will not trade the attention they themselves are getting from publishing it, for actually protecting their own kids.

The likes, love hearts and validation is more important apparently.