Sunday, 31 July 2016

The B Word

In my last post, I wrote about the book turned movie Me Before You and all the problematic messages that it sends.  Today I want to write a little more about just how widespread the messages and societal beliefs represented in the movie are.

Don't get me wrong here.  I'm not laying all the blame on this one single movie.  Movies and any form of media do not exist in a vacuum.  The ideas and messages within the movie reflect ideas and messages within society and replicate them.  The fact that the movie was so mainstream and widely popularised made it more of an issue however.  But the real problem as I pointed out in my previous post, is that it's just another in a long line of these kinds of narratives in entertainment media.  I'm not here to labour this point though.  What I really want to do today is unpack a bit more the word BURDEN and everything around it and the power it contains.  This is a very emotionally charged word and topic for me, so I apologise in advance if this post gets rambly.





Honestly, I don't know that anything I write today will make a lick of difference or get through to anyone who doesn't already get it.  Lord knows I felt discouraged and upset after I received a message or two from some people very close to me after my last post that essentially disregarded everything I had said and how I'd said I'd felt about it.  But I am determined to try.

The message that disabled people are a burden to society, and worse, the people around them, is widespread.  It's so prevalent that half the time we don't even notice.  The danger in that however is that we can end up internalising it without even realising it.  A little sidebar on the slightly academic side here: I have come to realise that a lot of this stigma and dread around being a burden or potentially a burden on others comes from the nature of our society and economic status as an individualist, neoliberal capitalist society.  Self-sufficiency and productivity are idealised in our cultural ethos and simply not attainable by many of us with health issues and disabilities.  In truth, they're not really fully attainable by anyone.  We are social creatures by nature and need each other.  Striving for competition over cooperation in my view goes against the grain of our general natures.  But more on that another day...

I've internalised these notions.  It's inevitable.  These ideas are pushed and ingrained into us from a young age.  I'm terrified of being a burden on others.  I'm terrified that one day my little brother and my best friend who I live with and who both help me out every day, will come to resent me for needing them so much for at times the most basic things.  I feel guilty all the time that I'm holding them back from being able to do what they want whenever they like.  I feel guilty that my parents have had to financially support me regularly because being sick is expensive and being sick means you can't work a full-time job so you can't earn a living, and even less so when you're studying.  I feel guilty and selfish because if one of my friends or family (especially those I rely heavily on for support) can't be contacted for reasons unknown, I get anxious because what will I do without them?  This is where the 'better off dead' message in Me Before You and countless other sources becomes so dangerous for me personally.

CONTENT WARNING: What follows is discussion of suicide, suicidal thoughts, and an almost attempted suicide.  Do not read further if you might be triggered by this.

Here is a picture of a happy fluffy bunny to act as a buffer so that if you need to leave, you won't accidentally see the content I am warning you of :)




There has been only one poignant moment where I have seriously come close to ending my own life.  These issues were at the root of them.  I was travelling in a car with all but one of my siblings, my younger brother was still living at home as he was still in high school and the plans were that he, myself and a couple of his friends would go flatting the following year when they all started university.  This meant that I would get the support I needed from my brother and he would have an easier transition from living at home to moving out, particularly as he too was struggling with his own health issues.  On that car ride I was cornered into an intervention-like discussion where I was left feeling like a selfish bitch holding my brother back and leeching off him and that he would resent me for stopping him from living at the halls of residence for his first year of university, even though if he had, I'd have had to give up my own studies and move back home as I couldn't live with my aunty who I was boarding with at the time for much longer.  I felt attacked and a complete waste of space and despite my best efforts to end the aggressive "discussion", there was no let up until I completely shut down and disengaged (not before I heard comments of me sulking and being immature and selfish).  I came very close to opening the car door and jumping out while it was travelling at 100km/h on the state highway.  It honestly felt like everyone would be better off without me.  I have never told any of them this, and no doubt if they read this they'll be horrified and have had no intention or realisation of making me feel that way.  Truth be told what they actually said was probably quite benign in isolation, but triggered those intense feelings of guilt and inadequacy and internalised ableism and reinforced messages that people like me are better off dead, and are burdens.

I stayed in bed and cried for about a week after that car ride.  I skipped all my classes and barely ate or left my room.  My younger brother was furious when he heard and yelled at the others.  It's all water under the bridge now, and relationships between my older siblings and I have well and truly been restored, but it took a long time for that trust to come back, and despite all this, the underlying issues persist.  Whether others choose to see it or not, disabled people like myself live in a world that would rather we didn't exist.  That finds our existence inconvenient (unless they can exploit it in some way - hello fetishism and inspiration porn) and draining, and we get reminded of this on a nigh on daily basis.  It's hard to unlearn behaviours and messages you've received and have compounded all your life when new sources keep coming and reinforcing the same messages over and over again.

I got hit hard again last weekend after I interpreted some words from my best friend in a similar way.  While I didn't go as far down the rabbit hole as the time I described previously, I did find myself again feeling like I was a burden and that everyone would be better off without me.

It's a shitty feeling and I don't wish it on anyone.  I want to live in a world where all lives are valued no matter their abilities or nonabilities.  I want to live in a world where all walks of life are treated with respect and supported in the ways they want and need.  I want to live in a world where all that is taken for granted and just second nature and no one feels guilty about it because why the hell should we feel guilty about needing help?  Everyone needs help in some way or another.  No one is an island.  And honestly? It's ok to depend on others, because all of us have something to offer in return whether we realise it or not.  I don't want to live in a world where the disabled and violence against the disabled are brushed off casually or barely featured in any news or conversation like the attack at Tsukui Lily Garden in Japan.  Annie Elainey again has a fantastic video about this.



I don't want to leave this post on a hopeless note.  I recently read an amazing piece by Laurie Penny who I admire hugely as a gifted wordsmith and in general an incredibly intelligent badass woman, but that's neither here nor there.  Her piece was about self-care in a late capitalist society.  While it is pretty tangential to my post, there was a great section that I want to share here:
The harder, duller work of self-care is about the everyday, impossible effort of getting up and getting through your life in a world that would prefer you cowed and compliant. A world whose abusive logic wants you to see no structural problems, but only problems with yourself, or with those more marginalized and vulnerable than you are. Real love, the kind that soothes and lasts, is not a feeling, but a verb, an action. It’s about what you do for another person over the course of days and weeks and years, the work put in to care and cathexis. That’s the kind of love we’re terribly bad at giving ourselves, especially on the left.
The broader left could learn a great deal from the queer community, which has long taken the attitude that caring for oneself and one’s friends in a world of prejudice is not an optional part of the struggle—in many ways, it is the struggle. Writer and trans icon Kate Bornstein’s rule number one is “Do whatever it takes to make your life more worth living. Just don’t be mean.” It’s more than likely that one of the reasons that the trans and queer communities continue to make such gains in culture, despite a violent backlash, is the broad recognition that self-care, mutual aid, and gentle support can be tools of resistance, too. 
So that's what I do and will continue to do.  On a final note, I will leave you with the words of the lovely and amazing Annie Elainey in her video on Me Before You that I also linked in my last post.  As always I'd love to hear your feedback.  Leave a comment below:
 I want to gently remind you that you are not burden.
You are not an inconvenience,
You do not hold your loved ones back.
The world would not be better off with you dead.
Your life matters, your life has value, you are allowed to take up space in this world.
As much as anyone else, you have a right to be here.

1 comment:

  1. I'm so sorry you've had to go through these experiences and I'm sorry most (all?) disabled people have probably been through something similar. I wish we had a world where this never was an issue too. Not much I can add to what you've said here, except to share the way I look at the point you talk about here:

    why the hell should we feel guilty about needing help? Everyone needs help in some way or another.

    YES! YESYESYES! I think it's easy for people to look at disability as a binary thing: this group of "normal" (excuse sarcastic air quotes) people over here, this group of disabled people over here, never the twain shall meet. And for the reasons you explain very well here, disabled people are as likely to fall into that trap as able-bodied ones. Even "disabled", while a convenient shorthand, reinforces that binary structure. But the way I see ability and disability is a sliding scale. Very few people are 100% physically perfect, and the amount of physical imperfection is a matter of degree, not a yes/no situation. And as you say, everyone needs help with some things. This is a huge topic as you're well aware and I could rant on for hours, but I will refrain:).

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