Now when people stare, I try to raise awareness and break down that stigma. Amy is a person before she is a person with a disability.
When I look at her, I see my beautiful amazing daughter. I don't see splints, a feeding tube, a wheelchair, and all of those other things that to others make her "different".
I want them to see her how I see her.
Recently I attended a trip with our lovely home start volunteer Carole and all of the other local families helped by this wonderful charity. Admittedly this is one of the harder days out we have had.
We went to a farm. Amy was mainly a little bit grumpy and needed constant Disney tunes playing in order to even try and interact with the world around her.
We were in the gift shop buying ice cream (not for Amy!) when I noticed 3 children were staring at me.
When children stare I don't mind as much. Children stare... it's what they do, especially if what they see is not the "norm" for them. But what I DO mind, is when parents do the wrong thing.
"STOP. STARING" shouted the mother. To which the children didn't respond and unabashedly continued to stare.
"I SAID STOP. STARING" she said again, growing more embarrassed and angry.
What I would have preferred is "oh have you seen a nice little girl? Why don't you go and say hi and tell her your names?” I don't live in a dream world I know... but this has happened a good few times.
Once a lady brought her child over and said "look at this lovely little girl! Doesn't she have a cool wheelchair... can you say hi to her?” I was gobsmacked. It made my day.
That first mum could have turned this encounter into an educational experience, a proper life lesson in inclusion and differences.
But instead she decided to feed the stigma and contribute to the sort of people who are taught to fear disability and disregard anyone who is different.
It is really disheartening, especially when now I feel we are in an age where acceptance and inclusion is on the increase.
I know that people sometimes do feel awkward and not know what to say, but if you have children who can speak you need to prepare for any sort of questioning of differences.
Those children may even have thought Amy could be a great potential friend - children don't judge as much as adults. They are very accepting.
As you can see, I have thought a lot about this micro encounter. I bet that mum doesn't even remember the incident or the impact it could have had on us.
I wish now I had gone over and introduced Amy to them. I'm not shy these days but was on that day.
I know I've said it it before but it's very important to me...
A wheelchair does NOT represent confinement. She is not "wheelchair bound".
I try not to get too caught up on the words but this one frustrates me. Her wheelchair is her FREEDOM. The problem is not everywhere is accessible.
The more people who advocate for wheelchair users the more change we will hopefully start to see.
Once when I was a child I used to see a man using a power chair. He lived local to me and he had a sign on the back of his chair that said "disabled not dead".
A bold statement, but I always thought "good on him". It reminds me of "the only disability is a bad attitude" which I know is cliché, but I do like that.
I've got it logged in my mind in the category that also holds "inchstones not milestones" and "fed is best".
Next - The feeding tube. No dear stranger, it is not oxygen! You'll be surprised how much I am asked that. I'm glad it isn't... imagine what that would do for her already bad gas issues!
The feeding tube... yes it does annoy me... the pump more specifically.
You could argue she is "tethered" to it 24 hours a day... but actually this amazing piece of medical technology enables her to do what? LIVE! It enables her to live. Without it, sadly she could not exist.
We are very thankful for the tube. Yes, she probably will always have it. No, it does not hurt her. Yes, I do manage it myself and no, I never imagined I would ever be doing it.
Like you... I deal with the cards I am dealt and so is she.
The splints? No, in our case they are not to help her walk. They are AFOs (ankle-foot orthotics)... The reason I hate them is because they make buying shoes difficult.
Also in summer they are a bit gross to wear sometimes. She doesn't hate them, they help keep her feet and legs in a good position, and if you're not paying attention she's really good at kicking you in the head with them.
This isn't a threat... a polite warning from someone who has learned the hard way too many times.
You get the point.
Our days are filled with many positive interactions and my favourite ones are the ones where people can overlook the risk of "looking silly" when she doesn't talk back, or turns away and ignores them.
The people who celebrate the coolness of the pattern on her splints or marvel at her awesome smile. I love the people who see her, especially when she's happy... and I can see her happiness rub off on them.
I don't like the whole being "inspired" by people with disabilities, but I can also see how they feel empowered seeing how she rocks life so well most of the time.
She knows no different from how she is, and whilst I know she deals with many pains, frustrations and challenges, I know that also she knows how loved and lucky she is.