“Outing” your children’s disabilities in the media is wrong

[mummy1970abc]

I think it is wrong. It is not your right to “out” your child’s medical “history” to the public.

I have a real problem with this. Firstly, my experience could be used to further the cause for many SEND children and parents, I am champing at the bit to tell everyone exactly what has happened to my kids..
but I won’t.. because I know it may have repercussions for them when they grow up..
And it’s not my story to tell..
if they want to tell the world their story - it’s up to them and they can, and I will support them.
i love the fact that celebs are out there championing the cause.. but I hate the fact that they are naming their kids (without their consent)

what are your thoughts?

Having read different responses I completely do understand why people would share for support or to raise awareness and normalise disabilities.

There are some influencers I really dislike who just seem to share and monetise everything about their children with no real thought about the digital footprint it is leaving. Or perhaps without much thought or sensitivity for whether it is suiting their needs. For example things like filming tantrums.

So it's a hard one really and depends on how it is done.

thank you everyone for your responses.
I think my concern is not about “hiding” their disabilities.. rather, that I am their parent, and that I am taking their choice of anonymity out of their hands, which I don’t think is my right to do.. especially when they are of an age where they cannot make an informed decision.
But I do totally agree that those parents and carers who have done have really helped the cause for the rest of us.
As evidenced by your comments, a dilemma for all of us.

My thoughts are that not all children with disabilities have the capacity to share their story it's all very well using well it's up to them when they are older but if they are severely impacted by their disabilities and are non verbal etc, do their parents not have the right to raise awareness
Or do we once again ignore the most vulnerable?

'We never had autism in our day. Nothing a good smack wouldnt solve'

'You're too young for arthritis, that's what happens when you get old'

'Can't you just discipline him and make him stay in bed?'

'We're all tired, you know. Mine was up three times a night until she was six and I work really hard being your boss'

'She's got a hearing aid now, so everything's fine and she can sit at the back/join in the clapping because her hearing's just the same as everybody else now '

Specifically keeping medical/disability stuff hidden feels more like the 'nobody must ever know as it's shameful to have a disabled/not perfect child' mentality that prevented so many children (and adults) from accessing support or having needs accommodated.

I don't believe that all people on SM are trying to raise awareness as much as they are money, but the 'It's private/secret, my child will never exist digitally until they're at least 18' could have an unintended consequence of disability becoming taboo and shameful again.

I hate the level of detail parents share about dc on Facebook and Instagram.

However i think until you are faced yourself with people's awful uninformed comments about your dc's disability you can't judge people trying to present the reality.

I kind of agree, but also agree with respecting their privacy

I will say that when my DD was diagnosed with her disabilities, I was hugely grateful to those who shared their stories on social media. They were far more help and informative than any of the medical professionals were.

My DD was a bit older when she received her diagnoses (15) and she chose herself to share and talk about them on her own social media. She’s an adult now and continues to do so as she wants to raise awareness, correct misconceptions and maybe help others going through what she went through.

She’s happy for me to post stuff on my social media if I want to, I tend to share news stories, information, etc, rather than direct information about her - but I only have very close friends and family on my private Facebook and Instagram accounts and they all know first hand anyway.

I remember reading about a family whose young daughter was diagnosed with autism and who basically used her image and name to promote autism awareness etc, campaigns all over the media, then when she got older she strongly objected and they've spent decades trying to get her name and image removed from the internet under the right to be forgotten.

I don't put anything identifiable about my kids online. Even somewhere anon like this I'd always change key details if I wanted to ask for advice. People should definitely not be putting private medical information about their children online, even if their motivations are good. I think future generations will think we were all barking mad to willingly share so much.

I agree.

One of my FB friends posted a few weeks ago to announce her son’s diagnosis (he’s 10) of ADHD and then started writing about the challenges she had to get him diagnosed etc.

I found it in such poor taste. That poor lad is having his diagnosis seen by hundreds of people, where on earth is his right to privacy?

Loads of parents at the school gates will now know it, and no doubt some of them will be telling other parents, or telling the children etc, it can so easily snowball and it’s incredibly unfair to the children etc.

It’s so inappropriate.

So if I found out something about my neighbour’s health for example, be it a physical disability or a mental health problem, would it be okay for me to make a FB announcement about it (including naming them) in order to raise awareness?

Or is it only children who don’t have any rights to privacy?

But maybe there are some aspects to disability that are private? The same as in non-disabled life? There was a publically accessible internet forum where one particular user would post a detailed "diary" of the struggles she had caring for her adult children - including difficulties with continence, skincare, etc.

The adults had no awareness she was doing this, no understanding of it even if they did and no way to consent (their disabilities caused them to have minimal consciousness).

People shouldn't be posting detailed descriptions of anyone's toiletting habits on a public website regardless of their state of health (in my opinion)....

Isn't it more just the case that everyone should be entitled to privacy around their medical information?

I don't think parents should share details of their children, whether those children have a disability, an illness, are ND, or none of those. Once done, that information can never be made private again.

I'm torn specifically on whether it should be OK to share if your child has autism/adhd or not. Because I guess that is something that some adults would like to advocate for and others may choose to keep private when it's thier own diagnosis. So maybe we should be cautious not to take that choice away from a child?
But then you wouldn't tell someone who had a child in a wheelchair not to discuss it publicly because that would be an awful thing to say. So maybe it depends on the nature of the disability.

There are certainly circumstances where sharing the nature of a disability would help a child get by in life. I don't think parents should be demonised for doing this. It's also quite different to sharing a neighbours health information (obviously).

As you said though these children have minimal awareness and are too impaired to share their own story
So should we just ignore the most vulnerable and pretend they don't exist?
It's not something i would fo ( my son is severely autistic, non verbal etc) but I thinkcare givers have a,right to show just how impacted their children are if they so wish.

But some adult s will never get that choice as they are too impaired to share their own story.

No, I don't think they do on some topics. I feel the same way about people sharing details of their non-disabled children's continence. Or about their elderly relatives'. Of course there are times when it's appropriate - in a care needs assessment for example, but that's a long way from sharing with the whole world intimate details.

The most vulnerable and disabled shouldn't be ignored, and of course have a place in society as much as anyone else. But they should also be entitled to dignity.

Well no because your neighbours disability has nothing to do with you and you wouldn't be a care giver for them so couldn't raise awareness as you wouldn't know what you are raising awareness for
Unlike your own child.

Mixed opinions.

I agree you shouldn’t glorify your child’s issues.

However, at the same time, I don’t think you should hide that disabilities exist.

Mind you, also don’t like children being promoted on instragram etc - the ‘Follow the Gavin-Stacy family around the works’ type threads.

Paddy McGuiness has shown how you can tell the story of having SEND children without exploiting them or invading their privacy. The contrast with say Katie Price and her son Harvey is marked.

It is very difficult to draw a line, though.

I have a friend who posts incredibly positively about her child with Downs Syndrome. It is lovely both heartwarming and educational, but the child hasn't consented. It doesn't make me feel uncomfortable like some of the wannabe influencer types but is my view clouded because she isn't doing it for personal gain and only posts to her own contacts rather than the influencer approach, when actually I should focus on the rights of the child.

I'd agree with this. If it's done out of self-interested publicity, yeah - that's crap.

However, and I say this as a late-diagnosed autistic, it'd be a wonderful world where the child didn't have any reason to want/need to hide their disability, and where the choice doesn't even occur to them because it's so unnecessary.

That's the world most of us want; one where it's not just considered socially unacceptable to discriminate against disability, but where it's considered irrelevant to the way people treat others.

We're nowhere near there yet. We might be there by the time the very young of today reach mid-life, though.

I have friends who post things like this and I've learned so much from their posts about all kinds of things, from daily struggles to things they wish were better, and I'm a better person for knowing it. If they hid it all away I'd understand but I wouldn't be as educated.

So a parent’s wish to raise awareness overrides the child’s right for their health status to be kept private?

i agree. i used to have a fairly successful page on FB to do with being disabled while raising a disabled child with autism.

I was open and honest about our story, and i advocated and helped people.. there's still a couple of meme's i created doing the rounds.

That being said, i never shared our names, i used nicknames, and i never shared photos.

You can raise awareness, and share stories without breaching privacy.