AIBU about using the term “ Tubie “ for a child with a feeding a tube.

[Iamfudgingfreezing]

I know I am probably unreasonable and it’s none of my business what others call their children but I can’t help it annoying me.
My DC2 has a feeding tube ( ng and jej tube ) I get increasingly annoyed if there is a question regarding one being tagged on SM along the lines of “ oh “my name “ has a Tubie. I do not have a Tubie I have a child who has a feeding device to help maintain nutrition.
I also can not understand why any parent would call their kids a Tubie like it’s their whole identity.
Example “ my Tubie is so brave “ “ my little Tubie “

I get irrationally annoyed over it 🤣 AIBU ?

@Flapjak yes exactly !!!!! That’s the exact point a tube is not a condition it is a piece of plastic.

I have no prob describing my own little boy as autistic

I wouldn’t like anybody else calling him that though, I’d prefer “had autism”

Language around health conditions and disabilities is so complicated, it's just so personal and varied, eg. "Person with disability" or "Disabled person".

I've said YABU though, because while you and your DC don't like the term, it is ok for others to like it. I lean towards thinking it should be down to the person affected what label is used, rather than their relative - but also aware that I referred to my DD as a preemie long before she was old enough to have a preference herself. So.. YABU in an entirely reasonable way.

I have a tube-fed child and although I don't use the term I can't say it bothers me massively.

I've only ever come across it in support groups though, never in the wild.

I understand that how you refer to a medical or neurological condition, or indeed any disability, may be different from what is reasonable for others to use about your DD or DS. However 'tubie' is awful and in my opinion should not be used.

I can see why you'd find it offensive. You have a child who happens to have a feeding tube. He/She is not solely defined by the tube.

I agree with the OP. It wouldn't be acceptable to say a child with Down syndrome is a Downie so why do some people feel Tubie is OK?

To me it feels almost reminiscent of when developmentally retarded was shortened to Retard. Its widely accepted now that retard is a disgusting thing to call someone but back then developmentally retarded was the phrase used, the objection was basically that the child is not the condition. It's the same kind of labelling and it's offensive. The tube is a device, the fact she needs a tube is due to a condition, SHE isn't the condition.

I totally agree with you OP. DD1 used to have a feeding tube and I would have been if anyone had referred to her as a tubie.

It is offensive. Would you call a child with a squint, ‘squinty?’ Even/especially your own child? YANBU.

Depends on context. On a forum fir a medical condition where quite a few require tube feeding I can see that parents may be distinguishing their tube fed twin from their twin who is feeding conventionally. It would never be acceptable for another person to describe your child as a tubie though, I've got a sn adult child so I do know I'm guilty of making light of it, you will see me here describing her as odd, quirky and crazy - but it's because I'm past being politically correct! My dd can be very difficult but I still love her!

@peak2021

I understand that how you refer to a medical or neurological condition, or indeed any disability, may be different from what is reasonable for others to use about your DD or DS. However 'tubie' is awful and in my opinion should not be used.

But if a child, or any other person with a feeding tube is happy with that word when describing themselves why is it wrong?

Ds will happily say of himself “I am a tubie” just like he used to call it his fuel pump.

Many children with tubes or other medical devices will have a name or term that they will use.

People deal with things in different way and if using such language helps that individual then so be it.

I have friends who refer to their children as tubies. They like the term and are happy to use it. I’d never use it to describe someone’s tube fed baby unless they did first.

DD was premature and we still say she was a preemie baby. To me that is a different thing though. She was a premature baby, it’s a fact. Preemie is just a more colloquial word for it. It’s also entirely different from “rainbow baby” as it is a medical term which describes her birth, not some made up concept.

I let her decide how to describe herself now. She hates “differently abled” with a passion. Isn’t a fan of “person with a disability” she uses disabled because she says that is what she is, but makes the point she is disabled by her environment, not her body. People have often asked what’s “wrong” with her which sends both of us off the deep end.

How people choose to describe themselves or their children is up to them. Fine to hate it being used for your child but a bit of a waste of energy to be bothered by other people using it for their children.

As someone said though, if someone referring to your child as a tubie is the worst you’ve heard, you’re doing well so far!

@Sirzy that's the attitude I have - my dd uses crazy ..,, (her name) as email and gaming handle, she amongst other conditions has moderate to severe mental illness. She is entitled to own her conditions. She knows ive described her as the crazy dd, she tells me I need to be honest and not sugarcoat for others

The worse I’ve heard ? 🤣 would you be saying the same I’d I said a friend women called my child with a squint, squinty.
It’s offensive as it’s an object on her face that people refer her to as.
You would call some with spots on their face spotty.

I had a DD who was tube fed for 9 years before she sadly died 4 years ago and I can honestly say I have never heard anyone use the expression/description 'tubie'. Is this a relatively new word people have invented? Everyone i ever encountered just said their DC was tube/PEG fed. They never used the tube as a descriptor.

When one of my children was diagnosed with a chronic autoimmune disease, I joined some relevant Facebook groups for support.
For this condition, in a severe case a child may be eligible for DLA and their parents carer allowance, but most children would not be, and can get on with life with minor adaptions, and a few more hospital appointments than a normal child.
These Facebook groups were a massive pity party and so many parents identity became tied up in their child's diagnosis, always talking about their "brave little soldiers", enquiring how someone managed to get DLA, and a disproportionate number had another child that was not neurotypical eg ADHD or on the spectrum. I joined the groups for support and knowledge exchange, but had to quit, because they were full of such negative energy.

Idiotic infantilising language is everywhere, especially when it's to do with medical or bodily stuff. Calling contractions "surges" is one that pisses me off.

@namechangealerttt it’s the same on the support groups for some of DD conditions I am not apart of any of them anymore alert from one and that’s because it’s very rare that the group is particularly small and very factual compared to the others.

I think if other people find it gives them a feeling of a sense of community, then that's fine. If you choose not to use it, then that's also fine.

But it's making me think. Some conditions/illnesses we do use a "name" others we say "person with..." What makes it right or wrong?
Diabetic/person with diabetes
Amputee/person with an amputation
Asthmatic/person with asthma
Those I think people would more commonly use the first. Why are those acceptable, and others not? Is it simply historic that these have been around for longer? Is it that "Tubie" sounds a bit twee because of "ie" on the end perhaps? I don't know.

People can call themselves/their child that, but yanbu to not want to join in.

Iamfudgingfreezing
Out of interest, where else are you seeing it?
I've only ever seen it used on relevant parenting support groups and haven't come across it (as another poster brilliantly termed it) 'in the wild'

I just said to my friend ‘oh no, it’s the I love a tubie week again’. I hate the phrase! My friend refers to her son by his name, not how he gets his nutrition!

Margaret it’s a valid question and a bit of a minefield I suppose. Daughter has a few conditions I always say she has rather than is or a nickname for it etc but I do find it less offensive than Tubie. I think the reason I find it offensive is because it’s actually an object like glasses / wheelchair / eye patch / rather than a condition it self ( I prefer to not use any of it though )

So “ autistic Danny, aspire Danny etc “
“ Sophie is Diabetic be sienna has diabetes “
But a tube is an object

“ Lola is a Tubie “ - it’s an object that is ok her face that is a device

“ Lola is a wheelie “ ( wheel chair )

“ Lola is a patchy” ( eye patch )

@MargaretThursday I can’t think of anyone who refers to their child as ‘my autistic’or ‘my diabetic’ in the same way some talk about ‘my tubie’. Each to their own and there’s no harm but irritating to some!

@LolaSmiles I am guessing it’s spread from the support groups of that makes sense.

So a friend who does not have a child with a feeding tube had a friend who son recently for a feeding tube and it’s “ of Sami has a Tubie “