Until Amy came into our lives, I hadn’t quite realised just how nosey people can be.
I remember that first nine months when she still had her ng tube (a big yellow feeding tube on her face) and I would be quizzed mercilessly by people who don’t even know my name!
“What’s that on her face? Will she ever eat? How long will she have it for? What happened at birth?”
I remember once stepping off a bus and just crying my eyes out the second I was alone – I just wanted someone to see my daughter for the amazing little person she is.
Is that too much to ask?
These days I’m much thicker skinned about it and I find that I just get angry inside about little things that irk me, such as what is “wrong” with her.
Tactful and well worded questions are fine, and I know that most people are just interested and not unkind...but I wish people would think a bit before they speak.
Quite often people immediately throw my daughter into the “disabled” category and I can see on their face that they view her totally differently to how they would if she was a “typical" child.
You can see their face turn…to pity, shock, sometimes even embarrassment.
Some people relate to you by immediately telling you about the one disabled person they know – regardless of diagnosis.
They assure you that she WILL defy the odds and walk, talk, speak, eat etc. because their friend’s cousin’s daughter’s friend did.
Three times this week I have been asked what is “wrong” with her. Firstly - STOP defining people by the diagnosis or by what they cannot do.
To me when you ask what is wrong you are implying my daughter is some sort of defect, something not right, something to be fixed. She is none of those things.
You see – You might think I’m just being petty, but when you actually look at the dictionary definition of “wrong”.
Definition: Wrong: not correct or true; incorrect. mistaken, in error, inaccurate, not accurate, inexact, not exact, imprecise, invalid, untrue, false, fallacious, wide of the mark, off target;
2.unjust, dishonest, or immoral, against the law, unlawful, illicit, indictable, lawless, lawbreaking, criminal, delinquent, felonious, dishonest, dishonourable, corrupt;
adverb1.in an unsuitable or undesirable manner.
noun1.an unjust, dishonest, or immoral, misdeed, bad deed, bad act/action, offence, injury, crime, unlawful act, illegal act, violation, infringement, infraction.
My daughter is not “inexact”! She is not invalid (I hate that one), not dishonest, not immoral.
Nope. None of those at all!
Can you kind of see what I mean though? After seeing the definition?
Yes we have challenges, both of our lives aren’t remotely like most other people’s lives, yes we have good days and bad days - just like everyone else.
Of all the things “wrong” in the world- there is absolutely nothing “wrong” about my daughter.
Yes I wish things were easier for her, but she’s happy, and I will dedicate my whole life to making sure it stays that way.
I will fight hard against people who perpetuate negative stereotypes, I will fight hard for people who can’t fight for themselves, I’ll fight to make sure everyone understands that EVERYONE is important – no-one is more valid or more important than anyone else.
My child is not her equipment - her feeding pump, her wheelchair, her standing frame.
She is a little girl.
One to be celebrated like any other (sorry... but celebrated more after some of the things she has overcome!).
My daughter doesn’t judge, she doesn’t lie, she doesn’t hurt people.
Once again; I fully understand how well meaning people are.
I love our encounters in public, we have met some truly fantastic and amazing people this way.
Sometimes 1000 good experiences can be ruined by that one bad experience.
You always remember the one that hurt most, more than the times you walked away feeling that the world is a good place.
It’s a shame I know!
See people as people, be kind to each other, be understanding, be respectful.
ALWAYS ask questions, that’s brilliant, I encourage it… but be careful.
We have been blessed with a language that holds a multitude of fantastic words – let’s utilise that.
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