Putting your now-disabled adult son on TikTok

[FreakInTheSheets]

Hello

There's an account on TikTok run by the parents of a young man based in the States. He was very seriously injured in a motorbike accident a few years ago and now needs round the clock care. He is paralysed from the chest down and non-verbal. He has some awareness and can interact minimally.

His parents make videos documenting his life/recovery/medical treatment. They seem pretty well off but presumably his medical bills are absolutely astronomical. They are clearly intelligent parents and very religious so they are looking for people to pray for a miracle basically. As well as make money for his treatment from views on TikTok.

This young man was (is) a very handsome young chap who was at uni, did sports and had friends and girlfriends. And now they see videos of him sitting in a chair with his parents spoon-feeding him whilst he grunts. I can't think of any young person who would be ok with this.

They have thousands of messages on each video encouraging them: "Oh I can see progress, praying for you".

How is this ok? He cannot consent to this. Literally none of the comments point this out. Is is justified to raise money to help his treatment?

Personally, I would like to add something to my Power of Attorney should something happen to me saying DO NOT put videos of me on TikTok!

What do you think?

It’s not ok.
It’s also not ok to have an account based solely on having an autistic child - once they’re able to see these videos they’ll probably be very unhappy that their ups and downs have been shared with complete strangers.
In fact I think I feel like this about any tiktokers cashing in on human dependents who cannot consent.

It sounds awful. 🙁

OTOH, living in the US myself, where it’s not uncommon for people to go bankrupt due to medical bills, there’s a tiny part of me that understands their desperation. They may be about to lose their home, for example.

It’s an awful situation and not one that we can truly understand unless we’ve faced it ourselves, iyswim.

Are you absolutely sure he can't consent?

@welshycake he had a serious brain injury and can hardly communicate so there's no way to know if he understands anything going on round him. Also, it's not really meaningful consent anyway, he would presumably only be consenting reluctantly to get the money to pay the medical bills.

But yes, as @BruFord says, I can totally understand the parents feeling like this is making the best of a bad situation.

If it means they can afford his medical and care bills then it's the lesser of two evils IMO.

I'm not really sure why anyone would seek out this sort of content

I’ve seen similar accounts and I agree that it’s not okay. Many of them are American, and even well off people with insurance and reserves can be unable to get the care they need after brain injury there so I think that is a motivation for many, rather than not caring about privacy or exploitation. I do follow accounts of people documenting their own recovery which is obviously completely different but I think provides some cover and maybe muddies the waters a bit, as it normalises sharing very personal and medical details.

I think this with lots of children too. Their parents share their whole lives on social media. They can't consent and when they are older may hate the fact that every single day of their lives has been photographed and shown to anyone who wants to see it.

@FreakInTheSheets It does sound horrible, tbh, but they may be hoping that someone can help out.

His medical bills could be running into hundreds of thousands at this point. I know a family irl whose son ended up in a wheelchair after a terrible accident ( luckily he was mentally ok). They had to downsize their house to fund his ongoing treatment. 🙁

It’s obviously wrong in terms of consent, and not justifiable, perhaps they need the money to pay for health and care services.

It came up on my "for you page". I don't follow the account. It would be from my algorithm because I've been googling things about travel in America and also about religion.

Their actual followers are fundamentalist religious folk "praying for a miracle".

Governments and regulators have been lax on this type of consent; also on child labour aspects - DC working on content for broadcast for their parents’ profit

It sounds deeply distasteful. But what is worse is that medical bills is the leading cause of bankruptcy in the US.

There are all kinds of things that people with significant disabilities can’t consent to: ultimately nobody caring for a brain damaged or learning disabled individual with impaired communication has any idea whether they’d want or consent to any aspect of what their family and carers do to them. But most parents make choices that they feel are in their DC’s best interests and believe they’d be comfortable/happy with - which is ultimately only what this man’s parents are doing.