Can we think of another word instead ... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Can we think of another word instead of using disability

Wittycjt profile image
11 Replies

Aka difficulties.. any suggestions?

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Wittycjt profile image
Wittycjt
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11 Replies
KellyInTexas profile image
KellyInTexasAdministrator

To what end?

For those needing financial compensation, wording means quite a lot.

For those needing to qualify for for various rehabilitation programs for insurance purposes ( USA) the wording the doctor used is key, as you know all to well.

If it’s just for our reading pleasure on here, pick your day, pick your forum member, and for goodness sake.... pick your INR / fXA level ( if it applies!)

We can be vertically challenged!

Gait challenged!

Memory challenged....

Pregnancy challenged... ( sounds rather strange )

Speech challenged,

Visually challenged...

Blood Challenged...

I would say... thick blood- final answer. “ We are a little thick.” Like the pop song from a few years ago- she’s just a little thick, bro! Not nice to make fun of the disabled for being a little thick!🤪

Ray46 profile image
Ray46 in reply toKellyInTexas

Or we could just use "crippled".

Why not? Ever felt this disease (or the drugs) has crippled you? I sure as heck have.

Words are just a label, it's what it _is_ that really matters - Shakespeare wasn't talking about roses when he said "... by any other name would smell as sweet".

Or, as George Carlin said "these poor people have been bull****ed by the system into believing that if you change the name of the condition somehow you'll change the condition". See youtube.com/watch?v=4EXlSTV... - warning the guy didn't mince his words, nor bleep them out. [If you want more you can also search for Carlin on PTSD, because sometimes the words do matter and soft language, obfuscating reality, is actually damaging, relevant for the next bit...]

BUT, But, but... as Kelly says, for the _system_, it is having the correct _label_ that counts. Being pigeon-holed into the right, or close as you can get, box may get you support, being in no box gets you nothing.

I have an autistic kid, for years we didn't know, it wasn't that obvious but the professionals involved couldn't tell us what it _was_. When we started to talk about autism assessment many people, including professionals, told us not to: "don't label him". But we did. Now he has a label (or labels), and where before we had zero effective support now we have disability benefits, transport funding, personal assistant funding, a special school place, therapists, psychiatrists, social workers, and so on. No, it's not a cure, but it has made life a heck of a lot better for us and him.

One of the things that pushed us towards getting proper assessment and diagnosis was that someone who described him as "_crippled_ by anxiety". For all the labels we have now, years down the line, those three words remain the most succinct and functionally accurate description of his condition. The speaker wasn't a health professional of any sort, or an autism specialist, he was simply a very perceptive school teacher who called a spade a spade. Can't thank him enough now. Another reason why I have zero objection to using "crippled".

KellyInTexas profile image
KellyInTexasAdministrator in reply toRay46

George Carlin... now there’s a way to wake up with a morning cup of coffee, Ray!

Totally relatable!

We too, have a son ( now 18 with APS also) mildly on the autism spectrum. He was diagnosed with mild Aspergers in grade 3, so quite young. The diagnosis also was a tool for us to get various therapies and accommodations where and if appropriate.

Most people don’t notice now- but age 5-13 it was more noticeable. Advanced, precocious vocabulary for his age and a bit socially forced.

He is considered, “ highly gifted.”

😂😂 Trying to figure out at what exactly at the moment...executive function is the nemesis. Quite common with Aspergers. It’s been the massive albatross for him. He denies the problem despite obvious issues and tests proving it out.... so how exactly is he highly gifted again?! ( Lol.)

Getting ready for uni - this is his last year in American high school, which is grades 9-12. He is currently in grade 12. ( you call our high school your college.)

He’s having some kind of existential crisis at the moment. The uni acceptance process and personal assays are incredibly difficult for him.

“ what makes you unique?

Why are you going to be the most amazing person in the world?

It’s important not to be boastful. How will humility serve you and all of mankind well? 😂

Ok, it’s not that transparently shallow, but ... aaak.

He also never did true community service. They want to see that. He never did it...his friends are not having a difficult time answering these prompts.

We’ve said for a few years we were going to use diversity of the mind as his unique trait. ( unis like diversity of student body.) but others jumped on the trend before we arrived on the scene...it’s over used now. We will let you know... he wants to go into a field similar to yours.)

hihannula profile image
hihannula in reply toKellyInTexas

Challenging conditions!

MaryF profile image
MaryFAdministrator

I think it is here to stay, and it is the way it is said rather than the word itself! MaryF

KellyInTexas profile image
KellyInTexasAdministrator in reply toMaryF

That’s it... that’s what I’m trying to say also in my very quirky trying to be funny but failing at it way...

Jillymo profile image
Jillymo

I could think of a few words - but they are not allowed to be said on here. 😏

Stereolover profile image
Stereolover

Unabled

Wittycjt profile image
Wittycjt in reply toStereolover

I like that even less 😖

Hughes-Comrade profile image
Hughes-Comrade

Challenged.

Mifford profile image
Mifford

The “disabled” tag has its uses as mentioned ... but I much prefer “Medically unique” 😃

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