Firstly, I am not a wheelchair user so I don't have too much of a right to discuss this issue with any degree of authority.
Secondly, every person (yes including those who require a wheelchair) are all different.
However, to completely contradict myself, I do have a few little bugbears I wanted to share with you all. I am sure you will relate to some if not all of them.
My days heavily feature a wheelchair, in fact it is probably one of my most repeated words these days, a long with stoma site, feeding pump, syringe, and all sorts of unexpected classics.
Recently Amy and I enjoyed a day out at a local soft play centre. It was SO busy. School holidays, nearing end of term... it was inevitable.
What WERE we thinking? In addition to this the two friends we had with us who also have a disability.
We arrived equipment galore, ready to take over a large area of space within the already cramped to capacity building.
Within seconds of arriving I got that sensation of grief and anger in my heart when I noticed that three of the four blue badge disabled bays were occupied by people who did NOT have a badge displayed nor did they have someone with them who has a disability.
This is the perfect way to absolutely enrage me and on some days can take over my mood for the day.
Who ARE these people? How can they be so utterly selfish?
I appreciate that yes the car park was very full. But a disabled bay is not a "there is nowhere else to park" bay, nor is it a "I want to park near the door because it's raining and I'm lazy" bay.
If it was it would say so. I was getting Amy's wheelchair assembled and as I did so an elderly lady drove in disappointed she could not park in the bay that she needed.
She did after all have a valid blue badge and also a mobility aid. I raged into the soft play centre and reported all three cars.
The tannoy came on and I felt that justice had sort of been served. I saw one lady get into her range rover with her three able bodied children who all leapt with ease into the car with no assistance needed whatsoever.
Imagine my consternation when I was queuing later on (still reeling from the parking episode) for a drink... when a lady decided it was perfectly okay to MOVE my child who was strapped into her wheelchair as if she were a piece of furniture.
EXCUSE ME lady, I do not pick up your child and place them elsewhere when they are in my way.
In fact, I was most likely protecting my child's life as yours ran round the sensory room they were too old for not looking where they were going whilst you were not supervising them in a different area of the building.
I know there may be some people who do not agree with this, but I firmly believe that wherever Amy and her chair are situated... unless she wants to move, or we actually NEED to move, then leave us be!
If the lady had squeezed past doing an awkward smile and saying "sorry" like I probably would have.. then fine. Or if she had "sorry would you mind if I just squeezed past" we would have politely adhered.
It was the fact she pretty much lifted the chair up and shoved it with force elsewhere.
To some it may have looked like a simple manoeuvre.. but to me, through my militant special needs mum eyes... I saw it as a dinosaur viciously attacking an unhatched dinosaur egg.
Without this post turning into some kind of rant (which I think may already have happened!) I also dislike when people talk to Amy but look at me.My personal view is that a wheelchair is an extension of Amy. It is her equipment that enables her to access (or not access, grr) the world around her.
To lean on it, or to move it out of the way is deeply disrespectful to me. Her wheelchair is not a post or fence to lean on whilst chatting to a friend, it is not a prop that can just be moved out of my way.
My daughter is not in your way... you need to alter your route and adapt a new way of thinking.
I am just her humble carer... this girl thrives on interaction.
Speak to her, do silly voices, sing, ask for high fives. Don't feel silly when she doesn't respond "typically".
She may look away, or appear like she is ignoring you, she may leave you hanging... she most certainly won't respond with words. But it doesn't matter.
I know it must be daunting for some people whose lives don't really feature much disability. But trust me, even if you seem awkward or feel silly... whatever you do is better than staring or being rude.
We know how hard you are trying and we know you are scared of doing the wrong thing.
If you don't park in disabled bays wrongly, don't move my child like furniture, and make an effort to treat us like real people - we will love it. We will probably even go home and tell our close ones about it and how included it made us all feel.
My favourite anecdotes are usually people who enraged me, or people who I feel really tried to make us just feel normal and included.
The people who tut at us in small shops because the wheelchair blocks the aisle - you are not our favourite. You are one unfortunate event away from a wheelchair being a huge part of your life too.
This isn't a threat, it is a reality.
The people who fall over themselves fumbling about to move chairs in a cafe so we can fit in with Amy's tractor (sorry wheelchair.
A bus driver genuinely referred to her chair being like a tractor once) are people we admire and remember.
We often perform extensive feng shui when arriving in such places and we thank you for joining us with that.
The people who insist Amy's wheelchair is a pram and won't accept it at all... you are the same people who ask me "how do they KNOW she can't see properly though when she's this small?!"... Follow us round for a week, you'll soon see the world through our eyes!
Wheelchairs are getting smaller and smaller these days to accommodate children with significant postural support needs - it's a great thing.
There will be parents who walked this path decades before me who will be in awe of the work of Firefly with their Goto Seats and simple yet life changing bits of equipment you'd never even think necessary until in our position. (Don't worry, I'm not about to start my why special needs parents are ingenuity are at one ramble... I will save that for another day)
The people who say, "WOW COOL WHEELS!"You are one of my favourites.
You understand the merits and freedom this piece of kit brings to our lives.
You aren't one of those antiquated people who would say "suffers" from cerebral palsy, or "confined to" a wheelchair. You are new age and nice, and yes, she does have cool wheels.
I can't wait until she has the more "typical" looking wheelchair so we can buy those big round circle things customised for her (I don't know the real word for it. Wheel covers?).
You're probably also the same people who talk directly to Amy and say "Hey, I love your wheels! What's your name?"... you probably know she can't reply but this doesn't stop you, so I will respond "her name is Amy-Rose. Are you going to wave and say hi Amy?"... and it's all very nice and inclusive how I want it to be.
I will leave this here. Please get in touch with your likes and dislikes and any experiences you've had when out and about. I do love a good story.