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

YOU.

[Image: a woman in a wheelchair sits in front of a grey shed door in the bright sun. Her hair dress and stockings are all pink her shoes silver.]




I am a disabled woman.

I am a disabled woman.

I AM A DISABLED WOMAN.

And

I am disabled by you.




Yes, you.

You there.

You who's looking shocked.

You who thinks, oh she can't mean me?

You who is starting to feel the slow creep of discomfort and defensiveness.




You who see inspiration and bravery before I act or speak a word.

You who feel the sharp pang of pity when I cross your line of sight.

You who pat me, or tell me in a Play School voice that I'm "doing so good!'

You who think, she doesn't look disabled. She doesn't sound disabled. She doesn't act disabled.

You who uses words like overcome and despite when referencing my disability.

You who see me and think, if only she could be fixed.

You who's first question is "so what's wrong with you?" or "what did you do to yourself?"

You who shares Inspiration Porn and simply can't see the problem. "But it is inspiring! Just look."

You who insist that I'm not a disabled woman, I'm a woman with a disability. And insist. And insist. And insist.

You who tell me that disability is a dirty word.

You who tell me I am a person, not my disability.

You who delight in your own perceived enlightenment, because you don't see my disability.

You who uses words like handicapable, (dis)ability, differently-abled.




Just say the fucking word.




You who cheer our paralympians, but baulk at forcing businesses to comply with even the most basic accessibility standards.

You who support accommodating disabled people, until it inconveniences you.

You who book events in inaccessible buildings.

You who create businesses with heavy doors, steps, no accessible change rooms and aisles too small or too cluttered.

You who work in them and say nothing.

You who see a ramp and think that access is sorted.

You who gets offended and angry when your failure is explained.

You who never considered accessibility in the first place.

You who say, why don't you just ring and check?

You who cannot understand how exhausting it is to ALWAYS have to ring ahead to check. And that a yes is no guarantee.

You who think, well disabled people never attend anyway.

You who cannot conceive that the constant lack of accessible venues becomes a self-fulfilling prophecy.





You who think it'll never happen to you.

You are too virtuous, health conscious, perfect, to ever become disabled.

You who knows and are, better.

You who uses the R word or it's derivatives.

You who tell me why it's not offensive, because it doesn't mean the same thing anymore.

You who instantly begin making excuses or explanations for perpetrators when I share my stories of Ableism. "But they had good intentions." "But he really means well." "But what about their feelings?" "Let me play devil's advocate for a second."

You who don't believe Ableism exists.

You who still don't know what Ableism is.




You who say, I wouldn't give in and use a mobility aid.

You who say, oh but I don't mean you. I'm not talking about you. It's okay for you to use one.

You who use terms like "wheelchair-bound" and "confined to a wheelchair".

You who feel defensive when I become angry at their use.

You who ask if I need help, then ignore me when I say "No thanks, I'm fine".

You who feel entitled to put your hands on me, on my wheelchair, without even the most basic of common courtesy to ask.

You who feel entitled to ask my medical history.

You who come up with such unique and witty lines as "that chair could take you to Mars", "Do you have a licence for that?" "The two of you should have a race."




You who think you are a great ally.

You who speak of diversity and privilege, but repeatedly fail to include disability in the list of marginalised groups.

You who speak of embracing your body. embracing your beauty. But fail to include disabled people in your narrative.

You who talks about embracing difference, when what you mean are the differences you find palatable. Not disability.

You who rally against violence, unemployment, homelessness and restrictive reproductive rights but never acknowledge that disabled people are frequently over represented in the statistics. That disabled people who also inhabit other marginalised groups are even more at risk.

You who discount lived experience. What would I know?

You who think your able-perspective can explain my life better, write my life better.

You who think your right trumps mine.

You who believes that in re-centering the narrative around the disabled voice, you are missing out.

You who speak of diversity but only on your terms.

You who think you know better.

You who think we should be grateful.

You who think I'm some sort of inspirational saint for simply living my life.

You who instead expect me to devolve into a puddle of weeping flesh because disability came my way.

You who think you're a superhero for your vigilante policing of accessible parking spaces.

You who shout FAKER and refuse to believe the permit sitting on the dash.

You who still can't understand that invisible disabilities exist.

You who knows most of them are bludgers, fakers, rorters, leaners.

You who tell me I'm "lucky that he's stuck around."

You who think I am so burdensome that I should not expect anyone to want to stay, or, to love me.

You who reads a story about the murder of a disabled child by a parent, a disabled wife by her husband, and think "Understandable" "Justifiable" "Act of Mercy" "Act of Love."




You who think I am pretty, articulate, confident,

FOR A DISABLED WOMAN.

I am disabled by your attitudes.

By your infantilisation.

By your low expectations.

By your erasure, wilful or unintentional.

I am disabled by you.



By you.



By you.



By you.

I AM A DISABLED WOMAN.

A proud disabled woman. 

An amazing disabled woman.

I AM A DISABLED WOMAN.

Michelle

Update: I wrote a post in response to some of the messages I received about this piece When you know better, do better.

Disability erasure at it's finest. Thanks Brazilian Vogue.

[Image: a screen shot of a Vogue Brazil promotional photo of able-bodied models Cleo Pires and Paulo Vilhena cripping it up thanks to the miracle of photoshop. Who knew your paralympic dreams are simply a mouse click away?]

How do you celebrate paralympians without actually celebrating paralympians? By photoshopping Brazilian soap opera actors to look like they are missing limbs. Actual paralympians were there on set. To provide inspiration. Because that's what disabled athletes and disabled people in general do best. We provide inspiration. Not enough to actually be in the photos. Oh no. We couldn't have that. Not us icky confronting disabled people. Ew. Who'd want them in Vogue. It might make people uncomfortable. But we can make the disabled totally relateable and palatable by using able-bodied actors. It's not like paralympians could be worthy in their own right. They are only worthy when seen in reference to the able-bodied. Look, they're just like us. Brazilian Vogue has come out to say it wasn't their concept and that the actors involved were responsible. That they chose to run with the advertisement and can see nothing wrong with the concept. Well lets just all shift the blame and sweep that part under the carpet.

The caption runs that "We're All Paralympians", Except we're not. I'm disabled, I've got the progressive neurological condition, even a set of wheels to get around, and a disabled parking permit, and still, I'm not a paralympian. Neither are the Brazilian soap stars in question, or any other able-bodied folk. Or 99% of disabled folk. You know who are paralympians? The actual paralympians. The disabled athletes at the height of their professional sporting careers, they are the paralympians. And they are the ones who aren't good enough to be in an advertisement promoting the Rio Paralympics.

What hope do us mere mortal, boring, average, run of the mill disabled folk have, if even paralympians can't make the cut for an ad for an event in which they are the stars.

In an advertisement promoting the Paralympics. I'm probably going to keep mentioning that part as despite having first seen this advertisement a day or two ago I am still gobsmacked that they came up with this concept and it made it's way through all sorts of levels where someone could have spoken up with a gentle "Hey mate, you might just want to rethink this", or a more direct "You're being an ableist dick, dude" and simply vetoed the whole idea.

It's just the latest instalment in the very public farce that has also meant that there is a shortfall in funding for the Paralympics. That money set aside to enable disabled athletes from poorer nations to attend was instead used to clean the green pools at the Olympics. That venues are being dismantled and many sites where the paralympians will be housed are not accessible. But hey, you know, they're for disabled folks, so it doesn't matter quite as much.

Whilst this is a very public example of ableism, it is symptomatic of a wider community attitude not just in Brazil but around the world, that disabled bodies are unpalatable and that as a group we matter less. And most of us don't have the currency of being awesome athletes to offset our unpalatable disability. Though in truth while so many are all happy to claim the achievements of our paralympians, the same people are often the ones that bemoan our drain on public coffers for the National Disability Insurance Scheme (NDIS) or are indignant at the humble parking permit.

Time and again we see discussions of disability not involving the disabled people who live the consequences of those discussions. We are continually talked about or around. Others know better. Hell, an able-bodied actor can play disabled better than an actual disabled actor. It's all very "Don't back-chat me fella. I know boats!"

Time and again we see discussions of diversity that don't include those with disability. We are either not included, or the issue is not even raised. Even in discussions of feminism disability has often been seen as an after thought or inconvenience, or disabled women have been told how to express their views and even shut out by groups purporting to support all women.

Time and again we see token representation. Oh you have one person in a wheelchair on one panel in a fortnight long festival. Well you've met the quota. It's not like we could have two disabled people present. Or that there could be more than one type of disability represented. Oh no. We are a homogenous group obviously. We must all think and live the same way. Or as in the glaring case of the Perth Writers Festival earlier this year accessibility was such an after thought that a disabled person couldn't even get around to see events. Nothing like an inaccessible festival to tell you in no uncertain terms that you're not welcome.

Time and again we see claims of diversity (I'm looking at you Myer) that don't include disability (or various ages, body types etc). Whilst organisations such as Starting with Julius are making great strides when it comes to including disabled children in advertising, adult representation is still far from common. The same companies that are using disabled children in advertising aren't transferring that same diversity to their adult range. And diversity in general rarely includes disabled models. Or if it does that representation is so rare as to be heralded as suddenly representing a more accepting and inclusive fashion industry. The same fashion industry that still fails, with some exceptions, to even acknowledge that disabled people can and do enjoy fashion.

Media in general still falls into three camps when reporting disability. We are either inspirational , worthy of pity, or as is now more often politically expedient, "bludgers" or "leaners". The media continually reinforce a negative portrayal of disability though their language (eg they continue to fall back to the use of terms such as "wheelchair-bound" or "sufferer" despite clear guidelines on disability reporting being readily accessible). Not only do the wider community come to believe these categories, but as this piece by Carrie Wade examines, disabled people as members of that same community, end up internalising ideas of Good Disabled and Bad Disabled. Or really it is Good Enough. We get a pass at a certain level. Not enough to be worthy of a Vogue shoot mind you. Don't start thinking you're good enough for that little disabled person. Good Enough that we approve of your existence, but know that you can easily become Bad Disabled at any time if you don't toe the party line.

It is the combination of these beliefs and actions that lead to increased levels of violence against the disabled.

We are less than.

Not even worthy of being in a photo shoot when at the pinnacle of sporting prowess, in an advertisement promoting and celebrating the pinnacle disabled sporting event. (The sarcastic part of me wants to know if Kylie Jenner was a consultant on the concept.)

Is it any surprise that more and more disabled people are turning to social media to share their lives in writing and through selfies on platforms such as Instagram and Tumblr. We are continuously erased from the current social zeitgeist by active exclusion or pity/inspiration tripe reporting. While the Brazilian Vogue issue is a glaring example it is both a product and extra fodder for the exclusion and othering or disabled people. Be it the recent massacre in Japan where the victims remain nameless numbers with the thin veneer of cultural norms used as an excuse for this erasure, or the disturbingly high rate of violence against disabled people, in particular disabled women, around the world including here in Australia, all derive from the same base level of negative beliefs surrounding disability and the people who are part of that community.

"Other statistics indicate that 90% of women with intellectual disabilities have been sexually abused. 68% of women with an intellectual disability will be subjected to sexual abuse before they reach 18 (Frohmader, 2002)".  (‘Double the Odds’ – Domestic Violence and Women with Disabilities: Written by Sue Salthouse and Carolyn Frohmader. This paper was presented to the ‘Home Truths’ Conference, Sheraton Towers, Southgate, Melbourne 15 -17 September 2004. Copyright 2004.)

It is estimated that 1 in 5 people are disabled. Yet we continue on the fringe, an unpalatable reminder of the fallibility of the human body and life in general. Disability is seen as a horror to be avoided and those who live it are seen as living horrible worthless lives. How on earth could someone be disabled AND happy? We are seem as villains in movies, welfare bludgers by the politicians, poor things (stop patting me, people!) or inspirational heroes for getting out of bed or buying milk. And when we raise our voice to call out ableism we are whingy. The people we hold to account for poor behaviour or attitude assume the role of victim. We are told to be quiet. People have good intentions. They know better. And they are shocked and angry that we have the audacity to say we might actually be able to articulate the nuances of life as a disabled person better than them.

"Pires [an abassador for the Rio Paralympics and one of the models] defended the photos on Instagram saying, ‘As ambassador, we lend our images to give visibility [to a cause], and that’s what we are doing, my God.’" 

AKA Damn you ungrateful disabled people how dare you tell me I'm wrong!

Brazilian Vogue and the actors/models involved can side step all they like. For the rest of us we can see it for the BS it is. And we're over being quiet.

Michelle

De Ja Vu: A man stands from his wheelchair and Buzzfeed decides to perpetuate abelism.

[Image: woman standing next to a wheelchair and holding walking stick. Same image is repeated in four coloured squares]

This is a reworking of an old post as this issue comes up again and again. De ja vu from Buzzfeed this time. Ignorant abelist crap and objectification of a person with disability as an object of mockery because they stood from their wheelchair. 


I'm tired. Tired of having the same conversation, about the same issues. Year after year after year. Back when I started this blog in 2009 I was discussing the hurtful comments challenging the validity, or existence, of illness. I have banged on about the whole myth of the look of illness and challenged perceptions about what constitutes disability. I have written so many posts on the topic that I couldn't even pick one to link up. And still, nearly 7 years after I first pushed publish, posts like today's ableist trash from Buzzfeed A man stood up out of his wheelchair after a Roger Federer Miracle shot  (although they are not alone as other outlets such as The Daily Mail Australia also thought it was hilarious), are doing the rounds of the Internet on a regular basis. And people continue to find them funny.

A man in a wheelchair stood up when Roger Federer hit a great shot at the Australian Open, and he became the subject of widespread mockery. A man went out to an event using a wheelchair for reasons only known to him. He enjoyed his evening and dared to show his excitement. And people decided he was fair game for mockery. Because disabled people, especially those who don't meet false expectations of disability, are by their very existence, fodder for jokes.

When I write an article many readers tend to relate to the issues I discuss. They have had the same experiences and the same reactions: hurt, anger, frustration, an overwhelming desire to resort to violence. But in many ways this is preaching to the converted. Those who read predominantly share the same views on these topics. But in the wider community it seems that little has changed. 

This "miracle" and "cure" joke, is doing the rounds, again. Because an ignorant and ableist journalist, although I use that term loosely, fails to understand that many wheelchair users like myself, aren't paralysed. Not only that, he trolled through social media to find gifs and tweets from fellow ignorant ableist citizens to share and enhance the hilarity. And what disappoints me even more, a Buzzfeed editor gave it a stamp of approval and it was published. 

The journalist and the posters, have not taken the time to think about the message such an article sends to friends and family who are living with illnesses that don't meet the limited ideal portrayed in the media. It also says a lot about how society, including a major internet site that claims to care about various isms, continues to view disability and illness in this day and age.

It says your illness and your experience is a joke. When they laugh at such an image they are essentially saying you, your illness, your challenges, pain etc are meaningless. When those who use a wheelchair but can still mobilise independently over short distances see such an article it is hard not to take offence. We know the mental and emotional challenge it can take to simple accept the need for a wheelchair. That we have internalised abelism that we must fight every day. We know that a wheelchair means difference at an age where most are simply out living life, starting careers, studying, having children or travelling. We know that every time we head out into the world someone will find our life a joke. Or, if you are unlucky enough to be this man, you and your situation, become a beacon for global for mockery.

I can say we shouldn't care. 

I can say we should simply ignore this article and others like it.

But sometimes no matter how stoic we are, such attitudes cut deep. 

And frankly, why the hell should we have to put up with mockery and disrespect on top of having to live with disability or debilitating illness?

Those who have not personally experienced serious or prolonged illness; who have never known the challenges of disability or seen how they affect a loved one, seem to still find the whole experience as nothing more than fodder for laughter.

What is lacking in our culture that many feel they have the right to mock, judge, or police others, for circumstances they don't bother to understand? When did compassion and minding your own damn business, get replaced with picking others apart for sport?

The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). 

The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps. 

Without my wheelchair I would rarely leave my house. Without my wheelchair I wouldn't shop. I'd never go to a gallery or a market. Or even attend many medical appointments. I have even been known to use my limited energy to push myself up from my wheelchair to grab a product from a higher shelf. I could very easily have been the man in that article.

If those who laughed at the article, or mocked others in the community for standing from their wheelchair, took the time to speak to the person in question they may find that they are recovering from surgery or illness or have Dysautonomia, Myotonia, Multiple Sclerosis, cancer, lung disease, heart failure, Ehlers Danlos Syndrome, Arthritis, Chronic Regional Pain Syndrome, or a host of other disabling conditions. 

But should these people have to explain themselves to the mockers? 

Should they have to lay bare their medical history to receive a basic level of respect?

Should we all wear coloured vests or carry neon signs stating our sick credentials to be treated with dignity?

This and other instances of the same"joke" (here, here), that continues to make the rounds on the Internet, is nothing short of insulting and reflects a basic lack of empathy and character upon those who both continue to share it, and those who laugh or say nothing.

I am tired of having to justify my existence to the wider community. I am tired of friends having to justify the use of mobility aides such as wheelchairs. I am not here to educate every idiot who finds this crap funny. I have enough on my plate to deal with on a day-to-day level. I don't need the added burden of playing the role of teacher every single day, day-after-day, year-after-year, for people who don't bother to think of how their attitudes affect those of us who have been in that man's position, or that man himself. Or who don't realise that they, or someone they love, may one day develop an illness or acquire an injury that will put them in such a position.

This is not about a lack of sense of humour, as is often the accusation made when people like myself question such jokes. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.

It is me who cannot stand, who collapses on the floor, who vomits up food on a regular basis, who cannot always hold a glass, and who cries into my pillow from the often unrelenting pain in my body. It is me who is often unable to walk from my bed to my bathroom and has undergone numerous painful and scary medical tests. And it is me who needs to use a wheelchair to access the world and doesn't meet the simplistic perceptions of others. 

I have paid my dues and can laugh at my experiences. But when able-bodied people post articles like this one, when they mock, or make derisive comments, they are misappropriating and minimising my experience and the experience of many others, for a cheap laugh.

It is nothing short of insulting and offensive.

Just as we shouldn't put up with sexist, racist, or homophobic memes, we shouldn't put up with this ableist crap either.

I am tired of having to explain myself. But I am more tired of simply sitting back and putting up with discrimination sugar-coated as humour.

If you post, share, or laugh at memes such as this, you are an arsehole. If you see it and say nothing, you are giving your tacit approval to that attitude. And I for one am going to call you on it.


Also check out more on this from:
The #AusOpen Miracle, and
A man stood out of his wheelchair after a Roger Federer Miracle Shot.



Update: Buzzfeed have decided to try and save the piece by adding five tweets from disability advocates. A piss poor attempt to placate the disability community and completely missing the point yet again. This doesn't alter the fact that they saw fit to post the piece in the first place and continue to see it as an appropriate piece. They even add a note at the bottom to say: 

UPDATE

This story has been updated to include comment from disability advocates and to reflect BuzzFeed’s editorial standards for reporting on disability. Jan. 30, 2016, at 8:25 a.m.

If this meets their editorial standards for reporting on disability I am truly disgusted. The piece needs to be removed, a no excuse apology offered, and consultation with the disability community undertaken immediately. This is more than simply an error of judgement. The piece was written, editor approved, and following justifiable outrage from the disability community, this is the response they chose.

Oh and it's not that we're "Not Happy" as the new improved title suggests. We're angry that a major media outlet would think that this shit is in any way appropriate. We're angry that they fail to see that this is the kind of bullshit that perpetuates stereotypes and cause harm. And if they'd bothered to read even one of the many blog posts or comments by disabled people they'd actually understand exactly why we have reacted in the manner that we have and why their non-apology, no effort, response is an infantalising pat on our heads. 

Michelle

Prove it.

A music celebrity singles out two concert goers not standing and dancing. The concert stops and security is sent over. It turns out one was in a wheelchair and one an amputee. Satisfied the celebrity declares that it's okay then, and proceeds with the concert.

Where oh where to start?

I'm not even going to mention his name. It's all over social media at the moment and I've had my say over on my FB page. And in truth, his identity is irrelevant except to point out his incredible display of wankerism. I'm not even going to get into the argument that if you've spent your hard earned cash on a concert ticket and want to sit throughout, that it's your right to do so. But for me there is a bigger issue at play.

What this represents is yet another example of ableism and the persistent idea that disability is visible.

What if, like for many people there was no wheelchair, no cane, no prosthetic, no visible difference that signified genuine disability. What if the ailment that they live with is completely invisible and they look well to those who don't know them.

As Invisible Illness Week 2014 comes to it's conclusion we are shown a very public example of how many people envision acceptable disability.

Living with a disorder that is for the most part invisible it's hard not to imagine the singer's reaction to my sitting if I wasn't in my chair. Standing, particularly for an extended period, is incredibly difficult for those living with Dysautonomia. Standing up is said to require three times the energy required for those without autonomic dysfunction. The same issue occurs in multiple conditions. Prolonged standing for those with EDS, ME, COPD, CRPS and many other chronic and traditionally invisible conditions can be incredibly difficult.

Yet we may save up our limited energy to attend a concert. We may up our meds, rest for days, and book out days after to recover. We do all that we can to attend any events and as much as we'd like to stand and dance, we are simply stoked to be there sitting in a seat watching the singer of choice.

To be singled out and chastised for not getting up and dancing would be embarrassing to say the least. To then have to prove why you have the right to be sitting. To have a complete stranger who knows nothing about you decide that your disability is valid or not valid is dehumanising and out right rude.

Imagine if that person was only just coming to terms with their disability?

You have to stand:

"unless you got a handicap pass where you get special parking and s---,"

Ugh. Which bit of ignorance to start with? 

Why should anyone have to prove disability? Especially to a complete entitled douche who thinks he has the right to both chastise and decide who can and cannot stand at his concert.

I am tired of others asking people to prove their disability. To prove that what they experience is real. That it is legitimate. I am tired that there is a continuing pervasive idea that only certain very visible issues are genuine or valid disabilities. I am over people who think that they have an instinctive right to judge the legitimacy of a person's disability. I am over people who have absolutely no expertise and no idea who suddenly feel they are experts in the field of disability and have developed some sort of superpower that enables them to identify disability at a single glance.

I don't wish this singer ill. I don't wish him to be in my position. I don't want him to spend a day in a wheelchair, after which he can just  get up and go on with life. I don't want him to think that the only way to experience disability is to be in a wheelchair. A day or a week or a month living my life, will not give him true insight into my experience. I have been ill 24/7 for 8 years and I will continue to be ill and get worse. A day in a wheelchair will not expose him to all that entails. And frankly why should that be what is required to simply act like a decent human being.

You can have compassion without understanding. You can have decency without understanding. You don't need to know the intricacy of anothers life to treat them with respect due any human being.

Disability comes in so many shades. Some visible. Some not. Some physical. Some psychological. Some intellectual. Some in a combination of all of those. I don't wish pain, or nausea, of passing out, or anxiety, or depression, or any other issue upon him or anyone else.

But I do wish that people would pull their heads out of their arse and

a) get some perspective,
b) stop trying to judge others on false criteria
c) become educated,
d) just be a decent compassionate human being who realises that they cannot spot disability at a single glance
e) have absolutely no right to ask for proof
f) or judge in the first place.

Oh and did I mention pull their head out of their arse.

Michelle

Be quiet little disabled person. You are making me uncomfortable.

I wasn't going to post about this issue. I am still angry so not in the most diplomatic of moods. But sometimes it's write it out, or sit and stew. So writing it is. 

A funny thing happened yesterday. A local radio personality admitted on radio that she had parked illegally in a disabled parking bay at a shopping centre and to compound her indiscretion and cover her crime, she affected a limp so people would think she was disabled. Cue laughter. Well laughter on the radio program. Not in the wider community. Especially not amongst disabled people and their allies. Those who complained were referred to as a "lynch mob" by the offending radio presenter this morning. Apparently the disabled community was "incited" by a fellow radio presenter, who rightly took offence to not only her actions, but segment in which it was the subject of much mirth, and called her on her behaviour.

Because we need someone to tell us when to get angry. We'd never work it out ourselves.

Her response this morning: "Now I need to point out I wasn't imitating a disabled person I have far more respect for them."

Well apart from the affected limp so people would think she was disabled and not question her illegal use of a disabled parking space. Or that she thinks a visibly discernable, stereotypical disability is the only type of disability there is (but that's a whole other post).

And those who raised their objections are named a "lynch mob".

After putting it to air on her own show and having a good laugh about it all.

Apparently disabled people should sit back quietly and smile like good disabled people, and not call her out on her ableist and illegal behaviour. How dare we be offended? How dare we react?

By calling responses a "lynch mob" she misses the greater point(s) and relegates what are reasonable objections to her behaviour to irrational mob mentality. And frankly, just fuels the fire.

It places her in the role of victim.

It downplays the difficulties and discrimination faced by disabled people everyday.

It downplays our right to voice our disgust when someone not only takes a parking bay designated to make the community accessible for those with disabilities, but also mimics disability and then laughs about it all.

Is she really surprised that the disabled have a voice and can use it? That we have minds and can formulate our own opinions? That we know how to use social media? And that we are no longer content to sit back and accept the ableist behaviour of the wider community. No matter who the perpetrator or the level of their transgression?

Her reaction plays into the idea that disabled people should sit back impotently and wait for others to speak and do for us. It plays into the idea that we should sit there smiling and grateful for the crumbs and pats on the head doled upon us by much of the wider community. It plays into the idea that we are incapable of having our own voice.

Admittedly the disabled community was already a tinderbox waiting for a spark. The current political and community discourse surrounding disability in Australia has reached a low of late. The loss of the Disability Discrimination Commissioner. The ceasing of funding for the only mainstream media voice for disabled people ABC RampUp,  attacks on the Disability Support Pension and labeling of recipients as lazy and scroungers in the mass media, mixed messages about delays to the rollout of the National Disability Insurance Scheme, to name but a few, have all led to a feeling of deep disrespect and outright hostility towards the disabled community.

Admittedly this is not the most outrageous or serious offence against our community. The appalling figures on violence against the disabled receives little to no airtime despite the seriousness of the issue. But this presenter's actions represent the more subtle, casual disdain for the disabled community that many experience every day. And in many ways these so called lesser offences are the foundation stone that allow all the other serious transgressions to occur. We let this go and it makes the next offence easier to bear. We let this go and it reinforces that these casual events are okay.

We are "told it's a joke, it wasn't directed at you personally, I was laughing at me not you, I like disabled people, I have a cousin who's disabled, stop being so sensitive, get over it, PC gone crazy, people are starving in Africa, war in the Middle East," etc.

Shut up and smile for the photo op disabled person. We like our disabled inspirational or pity worthy. Not pissy and noisy. You make us uncomfortable when you point out our ableism. You make us uncomfortable when you show you have your own voice. Sit back and let us tell you how you should react.

Sit back down while we tell you, you've made us feel bad.

I, like many, live with disability everyday. I live with the limitations and difficulties of my disorder 24/7, day after day, year after year. My family lives it with me. I have jumped through hoops for a disability parking permit. I jump through hoops to get minimal help. I have to prove my disability. I have to make my way in a world not designed to accommodate those of us with disabilities. I deal with judgement and disdain every day. I am told how I should behave and what I should say and how I should deal with my disability by those not living my experience.

I am entitled to my outrage. I am not a lynch mob. I am a woman with a disability who is sick and tired with the pervasive attitude that I am lesser, that I am other, that I am incapable of seeing blatant ableism when it occurs, and that my life and your reaction to it is fodder for laughs.

You may not understand my outrage. You may not understand what you did wrong. But that is your limited comprehension and empathy. And it doesn't make your behaviour any more palatable, or my outrage any less valid.

Apologies after the fact only when you are called out on your behaviour are meaningless.

Apologies that seek to excuse or minimise your behaviour are equally meaningless.

Apologies that seek to place you as the victim are insulting.

We have heard it all too many times before.

It shows that at heart you still do not understand why your behaviour was inappropriate.

It shows at heart that you do not appreciate the offence you have given.

In this case it shows that neither the perpetrator, the bystanders on the day, or the radio station who did promos based on the event, understand the offensive nature of the behaviour.

I am tired of having to explain and educate.

I am tired of fighting for simple respect on top of my dealing with the challenges of my disability.

Every time these events occur we see and interpret them through our lived experience. We carry a life experience marked by the general feeling that we are seen as less and other.

If this presenter and others like her cannot understand that, I am sorry for them.

As someone appropriately shared on Twitter last night.

"The standard we walk past, is the standard we accept."

I will no longer walk on by.

Michelle

*I did just want to add I do not agree with comments that have brought her child into the discussion or the use of some of the derogatory names that have been thrown around today. This does not add to the important dialogue that needs to take place and only creates further discord rather than respectful and meaningful discussion.

This is NOT funny.

I'm tired. Tired of having the same conversation, about the same issues. Year after year after year. Back when I started this blog in 2009 I was discussing the hurtful comments challenging the validity, or existence, of illness. I have banged on about the whole myth of the look of illness and challenged perceptions about what constitutes disability. I have written so many posts on the topic that I couldn't even pick one to link up. And still, nearly 5 years after I first pushed publish, pictures like the one below are doing the rounds of the Internet on a regular basis. And people continue to find them funny.

When I write an article many readers tend to relate to the issues I discuss. They have had the same experiences and the same reactions: hurt, anger, frustration, an overwhelming desire to resort to violence. But in many ways this is preaching to the converted. Those who read predominantly share the same views on these topics. But in the wider community it seems that little has changed. 

This meme is doing the rounds, again. It ended up on Mr Grumpy's timeline recently, despite the poster knowing that he has an ill wife. It has ended up on the timelines of numerous fellow patients, posted by friends and family who know their situation. And it hurts.

The posters have not taken the time to think about the message such a meme sends to friends and family who are living with illnesses that don't meet the limited ideal portrayed in the media. It also says a lot about how society continues to view disability and illness in this day and age.

It says your illness and your experience is a joke. When they laugh at such an image they are essentially saying you, your illness, your challenges, pain etc are meaningless. When those who use a wheelchair but can still mobilise independently over short distances see such an image it is hard not to take offence. We know the mental and emotional challenge it can take to simple accept the need for a wheelchair. We know that a wheelchair means difference at an age where most are simply out living life, starting careers, studying, having children or travelling. We know that every time we head out into the world someone will find our life a joke. Or, if you are unlucky enough to be this woman, you and your situation, become a beacon for global for mockery.

I can say we shouldn't care. 

I can say we should simply ignore this meme and others like it.

But sometimes no matter how stoic we are, such attitudes cut deep. 

And frankly, why the hell should we have to put up with mockery and disrespect on top of having to live with disability or debilitating illness?

Those who have not personally experienced serious or prolonged illness; who have never known the challenges of disability or seen how they affect a loved one, seem to still find the whole experience as nothing more than fodder for laughter.

What is lacking in our culture that many feel they have the right to mock, judge, or police others, for circumstances they don't bother to understand? When did compassion and minding your own damn business, get replaced with picking others apart for sport?

The idea that the only viable illness is one that lends itself to clear external markers, such as loss of hair or tubes and bandages, is so incredibly incorrect, as to make it laughable, especially given that figures for so called invisible illnesses are as high as 1 in 2 in some countries. The idea that disability is only seen in the use of a wheelchair, something unfortunately perpetuated by the most commonly used symbol for disability found on blue and white stickers worldwide, excludes millions of people in Australia alone (currently estimates are that approximately 20% of the population are living with some form of disability, only a small percentage of those are permanently in wheelchairs). The idea that only those with paralysis use wheelchairs is equally damaging to a large percentage of users who, like myself, can walk very short distances but are frequently unable to stand or walk for any substantial distance, or depending on the day, unable even to walk one or two steps. 

Without my wheelchair I would rarely leave my house. Without my wheelchair I wouldn't shop. I'd never go to a gallery or a market. Or even attend many medical appointments. I have even been known to use my limited energy to push myself up from my wheelchair to grab a product from a higher shelf. I could very easily have been the woman in that picture.

If those who laughed at the above picture, or mocked others in the community for standing from their wheelchair, took the time to speak to the person in question they may find that they are recovering from surgery or illness or have Dysautonomia, Myotonia, Multiple Sclerosis, cancer, lung disease, heart failure, Ehlers Danlos Syndrome, Arthritis, Chronic Regional Pain Syndrome, or a host of other disabling conditions. 

But should these people have to explain themselves to the mockers? 

Should they have to lay bear their medical history to receive a basic level of respect?

Should we all wear coloured vests or carry neon signs stating our sick credentials to be treated with dignity?

The meme above, that continues to make the rounds on the Internet, is nothing short of insulting and reflects a basic lack of empathy and character upon those who both continue to share it, and those who laugh or say nothing.

I am tired of having to justify my existence to the wider community. I am tired of friends having to justify the use of mobility aides such as wheelchairs. I am not here to educate every idiot who finds the above meme funny. I have enough on my plate to deal with on a day-to-day level. I don't need the added burden of playing the role of teacher every single day, day-after-day, year-after-year, for people who don't bother to think of how their attitudes affect those of us who have been in that woman's position, or that woman herself. Or who don't realise that they, or someone they love, may one day develop an illness or acquire an injury that will put them in such a position.

This is not about a lack of sense of humour, as is often the accusation made when people like myself question such jokes. Many of us in the chronic illness and disability community have well developed senses of humour. It is what helps make our lives bearable. We find the funny in the most unfunny of experiences. But we are using our own experiences, we mock ourselves not other people. We tread the hard path, the pain, the fear, the tears and the doubt, and we have the right to use our experiences. Others do not.

It is me who cannot stand, who collapses on the floor, who vomits up food on a regular basis, who cannot always hold a glass, and who cries into my pillow from the often unrelenting pain in my body. It is me who is often unable to walk from my bed to my bathroom and has undergone numerous painful and scary medical tests. And it is me who needs to use a wheelchair to access the world and doesn't meet the simplistic perceptions of others. 

I have paid my dues and can laugh at my experiences. But when able-bodied people post memes like the one above, when they mock, or make derisive comments, they are misappropriating and minimising my experience and the experience of many others, for a cheap laugh.

It is nothing short of insulting and offensive.

Just as we shouldn't put up with sexist, racist, or homophobic memes, we shouldn't put up with this ableist crap either.

I am tired of having to explain myself. But I am more tired of simply sitting back and putting up with discrimination sugar-coated as humour.

If you post, share, or laugh at memes such as this, you are an arsehole. If you see it and say nothing, you are giving your tacit approval to that attitude. And I for one am going to call you on it.

Michelle