Wednesday, 12 March 2014

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

14 comments:

  1. Bethany Schilling12 March 2014 at 14:17

    Hi Michelle. Thank you so much for your blog and for all of your posts. You are so honest and make me laugh so hard. I was diagnosed with POTS last year and have more testing coming up soon for other things. My family has been trying to get me to get a wheelchair but I won't do it yet because I know I can still walk some on my own and I don't want people mocking me if I decide to stand-up. I know you have covered this topic before but thank you for doing it again.
    my name is Bethany and I live in America in North Carolina.

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    Replies
    1. Hi Bethany. It's a sad indictment on society when we worry about getting a wheelchair, something that may help us access life far more, because of the attitudes of others. I know I was hesitant to get one initially and that was part of the reason, but am glad I gave in as it has meant I can do far more now. Have you read these?
      http://bobisdysautonomia.blogspot.com.au/2012/05/biting-bullet-wheelchairs-and-donkey.html
      http://bobisdysautonomia.blogspot.com.au/2013/11/giving-in-or-taking-control-mobility.html
      The first is more my coming to terms with needing a wheelchair and the second all the reasons why they can be a great idea.
      Good luck xx

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  2. Wow. A friend of mine lives with dysautonomia - her posts are sometimes chilling, sometimes heartening, always appreciated. She has, in the very real sense, brought her condition into the bright, harsh light of day and dares us, all of us, who read her words, to see. Dares us further, to look away.

    Kind of like you did here.

    This is fierce and angry and spewing with truths. And it's beautiful.

    Thank you.

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    1. "...fierce and angry and spewing with truths", gosh I love that line, Belly. I'm glad your friend has you by her side. It's a hard journey without friends by your side. :)

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  3. Thank you for your post Michelle. What you say is always so true. I have the same tiredness when it comes to educating others about my disability. It isn't down to me to prove I am disabled but for others to accept it. If they can't I don't want or need them in my life!
    Thank you for your blog Michelle xx

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    1. It is exhausting Rachel. I don't mind educating people but when it's a 24/7, 365 days a year of educating it becomes exhausting. I just want to be able to leave my house and head to the shops or the city or whatever and not have to deal with this kind of ignorant crap. (okay may still be a little angry) xx

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  4. I agree. Or the comments..."you don't look sick".... just drive me crazy.Like people want you to validate that you are sick somehow... by "looking" the part.

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    1. "You don't look sick" or all the versions of it, are like a trigger to me now. I know not all people mean it in a negative way, but when you have had to beg and plead for the care you need through an obstructive medical system for years on end and others have refused to believe you are ill, it is hard not to react.

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  5. an excellent, truthful & very well written piece

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  6. So well said, as usual, Michelle! We also need to find a way to bash the doctors over the head that question our "invisible" disabilities. Happened AGAIN to me yesterday. Nothing more anger-provoking

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    1. So sorry Lori. It's bad enough when the lay community judge or question but you expect better from trained medicos. I am grateful for my current team of docs, but I've had to deal with so many crap docs along the way. No wonder so many long term patients become bitter. xx

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  7. Thank you for this post! I've already shared it via twitter on my public account and via Facebook to my friends and family. I recently wrote a rant against another blogger who said he judges people who park in handicap parking spots who don't "look" disabled. Ableism at its finest.

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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