Monday, 20 November 2017

Goddamn you, he's a PERSON.

It happened to my Dad once.

As he was dying, it happened to him. His body was riddled with the cancer that would eventually kill him, and he was in so much pain he could no longer walk. Disabled too by time, something which we will all face if we live long enough. That very reason society shits on the elderly. No one has the patience to 'deal with' them, the slowed pace, the grumpiness about physical deterioration going hand in hand with awareness of their own mortality. These all hard won along with the wisdom of the years should earn them respect. But so rarely it does.

Those years forgotten. Achievements forgotten. To an ableist stranger, if you display disability, you are nothing.

We had all gone over for a visit, that last Thanksgiving together, the most melancholy I'd ever known. No joy, no thanks, just fear of what was coming. And the pain was fully in charge of the visit, forcing Dad's pride into his pocket and his body into a wheelchair. On that same trip we'd taken him out for dinner, one of the last we'd ever have with him. As I got Rukai and myself into the car, T started to wheel Pop from our table to the door of the restaurant. But he couldn't get there.

He couldn't get there because some impatient, selfish, ableist fool stood firmly in their way, looked directly in their eyes and wordlessly challenged them to just try to get past him. Oblivious to the scene from my vantage point in the car parked out front, they finally managed to escape and Dad was apoplectic with rage. A record number of F bombs, even for him - and for someone so weakened by disease to be so strengthened by anger told me all I needed to know about the exchange. Funny thing, big emotion. He was like entropy contained by two armrests and four wheels. The message embalmed in all that fury: goddamn you, I'm a person! How dare you disrespect me, merely because I cannot walk! If I were a younger man, I'd...


Five Thanksgivings later, here we are in this small town, on the other side of an ocean. Minus one Dad. Plus one inclusive mainstream school which has been amazing, as have all of its parents.

Until today.

Now, Rukai is not a steady walker. We know this so we are always aware of and courteous about space and the speed at which typical kids wish to plow across a playground. We try to keep to the side to keep things flowing. We go at our own pace. Admittedly, sometimes this pace is frustrating even for me, but it's Rukai's so it's ok. He's in charge of that show, I'm just the stage crew - opening and closing the curtains on each day, standing by in the green room making the tea.

Today we crossed the road more slowly than usual, hoping 'that-woman-with-the-pushchair' would pass us by before we could position ourselves on the narrow path. My way of thinking has always been that if you want people to be tolerant and accepting of your needs, you have to work within their norms while maintaining and teaching them your own. It's a bit like going outside to smoke before it was mandated. Courtesy for other people. That flows in my veins, it always has.

Clearly that doesn't work both ways.

Throngs pouring through the school gates, rushing to and fro to avoid missing that 'AM' attendance tick and having to go explain lateness again, I could actually feel the frustration as we hit the bottleneck at the gate, followed by the subsequent draft as people raced past us. After we were nearly rammed by three of them, I considered moving us to the side.

But why should we have to? If there's a roadblock while you're driving a car you don't expect it to move out of your way, do you? Slow the hell down or go around us. We have a right to be here too.

Now approaching the labyrinth of picnic tables, two pushchairs are passing one another. One heading in, one heading out. 'Out' pauses to let the other one through, with a slight smile and nod for 'In' and barely a glance at us. As we begin to navigate the same route, she barges past.

No room for you. Too slow. Get out of our way.

This did not just happen here. Not here.

No mate, you get out of our bloody way.
Goddamn you he's a person. You get out of our way.

I am on fire.
I bring Rukai up the ramp and our amazing TA is there, seeing it all on my face.
'Are you ok?'
No I'm not ok.
This is not ok.
Society is not ok.

I am broken. I am in shreds the past couple weeks and those shreds were just tossed on the fire and set alight. The black dog, the black death, whatever it's called it's got me in a choke hold right now. I completely lost my shit in the car on the way home and screamed it out. It made me feel better. Just. Meanwhile the wheel called 'things-which-are-so-bloody-hard-to-change' is rolling me into the mud again. Oh to break the wheel like that fictional Khaleesi.

It occurs to me that a talk I gave earlier in the year at work which required a bit of research into how society views Down's syndrome has really shaken me to the core. I cannot un-see or un-hear some of the horrible attitudes out there, I cannot take away the misinformation other than to write about it, to rail about it. And again - still, always - it's the external forces and attitudes in our world which cause us distress. Down's syndrome in and of itself does not.

And it never truly has.

We are the lady in the magician's box. Empty box, full of nothing but us, bright and beautiful and shining and full of promise. And then the lid is closed and in comes a blade.

And another: Fear.
And another: Prejudice.
And another: Discomfort with difference.

And that magic man completes the illusion by pulling all the pieces apart and showing you that wot hey! The puzzle no longer fits, it is not linear. It is the outside forces which challenge the wholeness of the lady in the box. Leave the box alone and it's nothing more than 'move along, there's nothing to see here'.

All these blades get jammed in, severing us, twisting us around, preventing us from just living in peace and then as quickly as it happens, out they come - away with the misinformation and fear and prejudice and discomfort. And the lady steps out with a grin and a curtsy, thanking the illusionist for cutting her to shreds. The unaffected watchers of it all sit and applaud, and sip their gin. Again.

No thank you. I'm tired of that box too.

Society is as broken as I am. It's like a never ending barrage of bad news and this next one takes the (urinal) biscuit...

In the past week I've read a great deal about something called Changing Places toilets, following social media commentary about the lack of them in John Lewis and other huge department stores. These toilets are designed to enable people who cannot weight bear to use a toilet or for their carers to change their incontinence products on an adult sized bed, through use of a hoist. These facilities prevent having to lay someone down on a filthy toilet floor to change them. Now, I have seen people recoil in horror when they watch someone enter the toilet on an airplane wearing only socks instead of shoes. Imagine having to lay your loved one on a toilet floor every single time you go out?

Because there are only 1044 Changing Places toilets in all of the UK. 1044.

I have two toilets in my house.
There's two or three sets of them across the road at the doctors.
More at Tesco.
The library and all the caf├ęs down the road in town.
At the park, the firehouse, the church...

I can use any of those. Others cannot. And even though our immediate family doesn't personally require a Changing Places toilet, the fact that others do and they are essentially prisoners to 1044 points on the map is a massive, massive problem to me.

Following this outcry over the lack of facilities for human beings trying to just live their lives, people have still had the rocks to moan about campaigners 'expecting too much' and other such ilk like 'you can't cater for all disabilities'.

Is that right? Ok, imagine waking up one morning and not being able to leave your house unless you mapped out a route via that magic 1044 places in the country where you could use a toilet, or change your child. Imagine that when you have spent ten years asking for a simple solution in more places, a solution which takes up about as much room as a parking space, that a retailer who will freely spend £7 million on a single advertisement will tell you that a) they cost too much and b) there's no room in their stores.

Ikea found room. Try again.

Ten years asking and it's not yet standard for new builds. The law has standardized how high bloody plug sockets have to be from the floor, and there are requirements about how many toilets must be in a bulding to align with number of occupants and even how wide the door to a disabled toilet must be. But a Changing Places toilet is not a disabled toilet. So to hell with you if you need more than standard help - stay in your house or seek out that 1 in 1044. Thank you for calling! Have a nice day!

It's little wonder I threw a wobbly in my car. I am flabbergasted by all this. Every day it's another inequality somewhere. The rich get richer, the poor get poorer and 'the disabled' get shit on. Repeat, repeat, repeat. That wheel is kicking my ass.

To all those big box retailers making excuses - shame on you. To all those with the attitude of 'get over it'. No. Never. Until society changes we will keep working tirelessly to change it. Because this is not good enough. I salute heartily all the campaigners - disabled people and able bodied parents / carers alike - who are out there fighting day in and day out for their right or their children's right to dignity. They are fighting for their right to exist, when society would find it simpler to lock them away, to prevent them from participating in life.

And that is wrong on every level. Should a human being actually have to prove they have the right to exist? Check your troubles at the door and take that one on, friends. This is Rukai's long term challenge, not bloody Down's syndrome. Down's syndrome is society's excuse to treat my son like a piece of purposeless garbage.

Not on my watch, mate. I know better and you will learn, you best believe it.

This broken society looks past my son and others who have Ds as if they were a problem who shouldn't even exist at worst, or a plaything who can only give hugs and high fives, and keep them smiling at best. He is a boy with a future who will not be mown down by people moving too quickly around him. He will not be a child for the rest of his life (despite what someone said to me when he was born, which five years later still irritates me). He will be a man and if I have anything to say about it the world will be a far better place by the time he has grown up. I eagerly await the days when he will advocate for himself. And I guarantee that I will be the proudest wing man of all time.

Failing that, I will die trying. I would hope to die very old, disabled from time, still caring about all these things.

And so should you.


Twitter: @downinfrontpls