Friday, 6 October 2017

It's not just a step


[Image: Handwritten sign sticky tapped to the glass in a yellow door. The sign reads, WHEELCHAIR RAMP AVAILABLE. PLEASE ASK AT COUNTER, with a cartoon of a ramp over two steps. (source)]



I enjoy going out to eat, even if it's one chip and a couple of Ondans. I like going for a glass of wine, sitting and chatting, mostly at Mr Grumpy as he sits and nods and uh huhs, in all the right places.

Lucille is loaded on the back of the car, her cherry red cover a bright spot in the rear view mirror. I head out of the four walls that make up 90% of my week. Legs, bp, energy particularly unobliging but I have Lucille who allows me to leave the house with independence, to participate in the world. I head out on a Friday night like half the town. People enter pubs, restaurants and music venues. There's laughter, orders are placed, tonight's live music duo start to set up. I head out only to find a step.

It's just a step.

I should have rung ahead. I should have checked. Again. Again. Again.

There's a portable ramp.

Just ask.

Not that there are any signs to let you know it exists.

But I can't go through the front door. It's around the side in the tiny alley where you can't really manoeuvre. They'll move the bins, and the chairs, and the mop and bucket stored down the side.

Everyone is overly solicitous and the crowd of onlookers gawk as the spectacle unfolds.

Do you need a hand? No. I'll just...the hand reaches across ignoring my response. They pull and push. Complexity increases. I'm right. Let me just...I now negotiate the armpit and the body. How to fit between door frame and arm and body now towering over me, and also miss the toes that are now in the only path I can take?

There's applause. Or "a good on you" "well done."

I feel the tightening in my stomach, the fake thank you leaves my lips. The evening starts as it always does as public spectacle and it'll end in the same way. I can neither arrive or leave on my own. I must ask and wait. I must be grateful. The energy expenditure is huge I am tired before I even see the wine list. The shine is taken from the night. Again. Again. Again.

It's not just a step.



I'm sitting eating my meal, talking to Mr Grumpy and enjoying the scenery and I hear "that thing could take you to the moon!" I grimace then smile, suck down the visceral reaction. I am expected to interact with the older men at the adjoining table. They mean well. I turn away and they keep talking at me, asking questions, making inane comments. They look well pleased with themselves for deigning to interact with the woman in the wheelchair.

It's not just a step.



The step nearly trips me, but my other half and walking stick get me up there. I sit and have a glass of wine. I prepare to leave and an old guy thinks it's hilarious to ask about my "war wound" chuffed with his sparkling wit. He waits, expecting an explanation. I mutter a surly "it's not a war wound" and steady myself to descend the steps tension now in my previously relaxed shoulders.

It's not just a step.




The clothing store has a ramp, but a door I can't open. Someone comes frantically running. Overly solicitous. Sing song voice.

I'm in but can't manoeuvre through the racks or tables thanks to displays that spill over at ground level.

They have a friend, neighbour, second cousin twice removed who is disabled. Do I know them?

It's so good I get out.

So what's wrong with you?

As I head to the back of the store, dress in my lap, it becomes clear that there is no accessible change room. I head back out the door. No purchase made.

It's not just a step.




I go gift shopping. But the first store has a step. The second store? A step and a doorway too small to enter. The third a nice wide opening but a saleswoman who continues to talk to me like she's auditioning for Play School and pats me as I try to just look at the products.

It's not just a step.



I'm at the medical clinic and need to use the loo. But the door's too heavy. The short wall to conceal the room makes the turning circle near impossible, well if I want to keep the skin on my fingers. I need assistance to open the door to the accessible loo. I need it once more to get out. The Clayton's accessible loo seems favoured where ever I go.

I roll into the GP's room clipping the too small doorway. I can't get up onto the table. The pity looks start. The pat.

I roll out once more to pay at the desk I can't see over.

It's not just a step.




My husband goes to park in the accessible bay. Only someone is there. We drive on by because we can't see if there is or isn't a permit. Drive on by until we can find a spot somewhere, far away from our destination, where he can get my wheelchair off and around to my side of the car.

We pass the bay next to our destination only to see the car has no permit. But they're only going to be a minute. They'll move if someone needs it. Screw you and your special privileges. They're missing out because they don't get special bays. Nobody uses it anyway. Disabled people don't go the gym, the nightclub, the bar, the cafe, the.... Disabled people don't go out after dark. Or on weekends. Screw you, there are more important things in the world.

It's not just a step.




Where's your companion? I don't have one. I'm here alone. I'll keep this seat for your carer. I'm here alone. Have you got someone with you, dear? No I'm alone. Oh good on you getting out and about.

It's not just a step.




It's not just a step, or a side entrance, or an infantilising voice, or an entitled attitude to parking bays, or the norm of steps, small doorways, heavy doors, small aisles, or no change rooms.

It's not just the inability to see me as a singular independent woman.

Or the rude and invasive questions.

But that it fits into a narrative comprised of a long list of anothers, that are carried by the disabled community day after day after day.




Another accessible parking fiasco reigns across Facebook.
Another advocate receiving death threats.
Another person is unable to access public transport.
Another forced to prove their disability.
Another can't access their place of employment.
Another misses out on tickets due to a cumbersome accessible ticketing procedures.
Another writing residency that's not accessible.
Another meme about lists marginalised groups that forgets disability exists.
Another advocacy event that is inaccessible.
Another dies because doctors couldn't see beyond their disability.
Another dies at the hands of police.
Another is murdered in a mercy killing.
Another refusal to conduct a Royal Commission into institutional abuse.
Another appalling statistic about violence and abuse gets two lines before being buried under a mound of celebrity articles, or forgotten when citing statistics of violence and abuse in other intersecting groups.
Another story where segregation and subjugation are marketed as inclusive.
Another where people are employed for a pittance while the able-bodied organisers collect their regular pay checks and sit around and pat themselves on the back.
Another stat on homelessness and the ridiculous lack of accessible accommodation both in public and private housing.
Another story indicating we are better off dead than disabled.
Another inspirational school quarterback takes disabled girl to prom, story.
Another demand that disabled people put in the emotional labour to explain.
Another able-bodied journalist, commentator, troll, deciding how we should feel, act, live, or die.
Another saying overtly and more subtly that we could not possibly be the experts on our lives or our needs and wants.
Another.

Another in the long lists of anothers.




Another built on top of all the others before it. Weighing us down. Exhausting us. Until we either lash out or give in.

Because it's not just a step.




It is all the steps that have been before and will be again in the future. It's how they weave together to frame us. How they make their way to the very core of our being. How even when we pride ourselves on our strength and self-assurance, it gets in through the cracks. A putrid water leaching up through our foundations to hit us in the hidden parts of self. And how we grin and bear so much of it because you have to really pick your battles.

A long never ending list. A list that says we aren't welcome. We aren't important. We aren't even an afterthought. We are less than. We are forgettable.

I am tired of asking. Of making phone calls or scenes. I'm tired that I roll past business after business after business that remains inaccessible.

It's that when I speak out I am chastised. Be quiet little disabled person. You are making me uncomfortable. Be grateful. Stop being a victim. God, you're bitter. Smile. Just ignore it. Get over it. You're making me feel bad so screw you and all disabled people. There's people dying in Africa, don't you know. Let me play devils advocate for a moment.




It's that I list off all the reasons we have to be upset and angry, (Disability erasure at it's finest), I get lots of head nodding and agreement. Outrage that bursts forth, then dwindles, is forgotten, and nothing changes.




It's not just a step.




It is that this world remains largely inaccessible to disabled people. Societal and institutional discrimination continues to weigh heavily on our access to not just a shop front, or our ability to go out on a Friday night, but to the societal interactions that most take for granted. A burden that we unequally must bear along with whatever our body may have thrown at us.

It's not just a step and I am tired.



Michelle



8 comments:

  1. Michelle, this is magnificent. Where to even begin? Those clever commenters who think they are the first to come up with such witty quips, then look at you as if asking for applause. HA. HA. HA. IT IS QUITE FUNNY THAT I AM USING A MOBILITY DEVICE, THANKS FOR REMARKING.

    The "mercy" killings where a parent's life is so devastated by *gasp* having a disabled child, that their only recourse is to murder an innocent creature in cold blood. As if their child had no life of their own, no existence besides being the object of pity and revulsion.

    Out of all public venues, surely a medical office should be most accessible. The fact that many are not (including my own), is testament to the regard (or lack thereof) for disabled people and people with a chronic illness in the modern medical model.

    Bravo - and I am so glad you feel up to writing again.

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    Replies
    1. The medical centres and hospitals really get to me, out of anywhere they should be more aware of accessibility issues.

      "Mercy" killings are so repulsive. The media always finds some way to twist it so that it's somehow an act of love, framing disability as a burden and therefore it's all understandable. Just horrible. :(

      It's been a while for writing. My brain's still sluggish but I think the fog is finally lifting.

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  2. Thank you so much Michelle. I'd say the fog is definitely lifted, this is wonderful.

    And yep, the medical centres! My latest one was volunteering to have some blood taken for a research study for a chronic illness. The pathology lab was on the first floor of a medical practice. In a building where I couldn't even get into the ground floor because of the steps -let alone upstairs because there wasn't an internal lift either. You'd think at least one of the three organisations involved would consider this a potential problem. Sigh.

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  3. Thanks, Michelle. I'm relatively new to the world of immobility (since November 2013), but have concluded that I have life relatively easy, despite living in a house with multiple steps at all entrances/exits on a street with a 30º slope and no footpaths on my side of the road. But there are no internal steps or stairs, thankfully.

    Local shopping malls have pretty good accessibility, plenty of disability parking that's rarely abused and accessible toilets that that are exactly that. My GP's clinic has a toilet that I can easily manoeuvre my mobility scooter in and consulting and treatment rooms I can access easily as well.

    I spend an awful lot of time in a cluster of three hospitals, including a brand new one that cost half a billion dollars and has disability/accessible toilets — that really are — seemingly everywhere.

    My mobility scooter is quick and easy to assemble/dismantle and fits easily into the boot of our station wagon — but can't handle more than a 6º incline. To leave home, I need to drive, which I can still do, thankfully.

    But I still run into plenty of the ableist attitudes and unconscious ignorance you mention, and as a semi-retired (72 yo) writer and strategist I'm making time to do some strategic planning, including getting to understand and make contacts in the disability word, with a view to helping make changes that make life easier, safer, better and more enjoyable for Australia's largest minority.

    I enjoyed this article… real substance delivered in well-written form is always hopeful, I find.

    Thanks again.

    John

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  4. Michelle, spot on. The US , which has had ADA Laws for almost 30 years, is trying to rescind them. It's cheaper not to have the portable ramp which leads to a messy hall past an accessible toilet which really isn't accessible because of the other stufff crammed in . The door still swings in or out, into the waiter's face. The chair is too bulky and messes up the decor. Better we , wheelchairs, order on line.

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  5. Michelle, thank you so much for articulating everything I experience! Every time I read your blog, I identify with so much of what you say. You've expressed the anger and frustration I feel about the lack of access to buildings, etc. and the reactions of non-disabled people when encountering those of us with challenges.
    I applaud you for telling it like it is! Bravo!

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  6. I saw your post shared a couple of times this week on Facebook.. and that's because it's amazingly spot-on and describes so perfectly many of the challenges that pop up when you've got these pesky disabilities. I have my own health issues but at the moment I am encountering this whole new world of ableism as my 16 y.o. daughter has a somewhat mystery condition that causes constant pain and means she needs to sometimes use a wheely walker. I think people assume that because we have laws that are meant to ensure accessibility and prevent discrimination, those things don't happen.
    I just read your about page, too, and it was hilarious so I'm definitely going to stick around to read more. I love that the internet lets us connect to so many people the world over who are having similar experiences, but I especially love finding an Aussie who has a similarly irreverent and slightly dark take on things that you don't often find in people from elsewhere :)
    Hope the steps are keeping out of your way lately. Keep on being awesome :)

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  7. Great post! Just today someone was very sarcastic with me because of my limitations. I applaud you for telling it like it is☺

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx