A Few Thoughts On Positive Thinking And Disability

Something's been doing my head in for a while now, and I've been seeing a fair bit of it about, so I've decided have a crack at unraveling it out of my head and onto paper.

I'm talking about positive thinking, inspiration, the law of attraction, karma, gratitude, and the current relentless push towards happiness 24/7. You know the kind of thing, it's spawned a pop culture juggernaut. New age authors churn out book after book - The Secret being the most famous - and motivational speakers with an often tenuous grasp of psychological theory make a mint proposing it's possible to make sweeping changes to undesirable circumstances  if we just channel enough positive thought and energy into whatever it is we want to achieve. Facebook and Pinterest are chock full of memes so saccharine they'd make Mary Poppins vomit, like "It's always impossible until it's done! and "A warm smile is the universal language of kindness!". ( Yeech. Yes, really. I looked this up ). Oh, and my personal favourite, "The only disability in life is a bad attitude." WTF?! Seriously, what does that even mean?

Now before I go sounding like the evil spawn of Moe Szyslak and Grumpy Cat, I want to clarify right here and now that of course I don't think there's anything wrong with being positivity, and gratitude, and even a little inspiration now and again. Quite the reverse, actually. I think that it's immensely important for us spoilt westerners, who for the most part, live in high levels of material comfort to be grateful for it. And it stands to reason that if someone is going through a rough patch, that a positive attitude is going to do more to help than pessimism. And I think that human beings from all walks of life are occasionally inspirational. In fact, as someone with a lifelong interest in metaphysics, I'm open to the idea that everything is energetically connected, and that there is an indefinable "presence", that we can kind of "tune into" and use beneficially. Call it God/Goddess, energy, collective consciousness, the force, prana. Or reject the premise entirely. I don't mind. It's just that sometimes it seems as though disabled people are expected to be inspirational. 

As anyone who knows already knows, I'm a voracious reader, so I've gone through a lot of the books by Eckart Tolle, Shakti Gawain, Wayne Dyer et al, and in my opinion much of it has value. It's just that you have to do reams of sifting, and huge amounts of critical thinking, to wade past the breathlessly enthusiastic spiritual materialism of "manifest yourself a new job/car/lover/ and even - crucially for my argument - a sexier, fitter, healthier body - by thinking more positively!" The premise being we create our own realities with our own minds  (a valid spiritual principle taken from Buddhism, but vastly oversimplified in this context). Therefore, the New Age argument goes, if things don't work well for you and you're experiencing bad relationships, economic strain, or ill health, it's somehow your own fault, because you have a negative attitude, negative karma, etc, etc. I don't doubt for a moment (and there is credible evidence to back this up) that stress and other mental states can certainly impact the physical body. And who knows, maybe we do have unfinished business from previous lives that manifest as illness/disability. I don't claim to know, but I do know that the issues involved in living in this world with a disability are far more complex than most people realise. Let me explain: 

Everybody gets that it's no picnic to have a disability, right? While I personally think there's an over emphasis on the medical aspects of impairment, it's hard to deny that life with a disability has its challenges for the individual. It doesn't take a lot of imagination, education or empathy to work that out. What tends to be less well recognised, however, is that disabled people as a minority group also face widespread, systemic, sociological impediments to our well being that are not caused by the presence of a biological impairment. 

Okay, take a deep breath and brace yourselves - it's uncomfortable factoids time: Despite the undeniable and welcome progress worldwide over the last few decades, it's a fact that archaic stereotypes still linger and subtly influence everything about our lives, from political policies on down to how we are portrayed in the media and treated on the street. Lack of access to public transport and everyday places like shops, restaurants and public toilets is legendary among those who have mobility impairments and guide dogs. Discriminatory attitudes in the workplace and schools are still in place and can lead to academic under achievement and life long poverty, and bullying of disabled children in schools is still heartbreakingly common. Women and girls with a disability are significantly more likely to experience sexual and domestic violence than their non-disabled counterparts. In Australia there about 6500 young disabled people in aged care facilities. The OECD has for several years now rated Australians with a disability as more likely to be living in poverty than in any other developed country - and it's beginning to look like most of us will die of old age before we see the NDIS properly implemented. I don't doubt that there are similar challenges in other countries, but I think it's clear that the Lucky Country needs to lift it's game in regard to it's responsibility to it's disabled citizens. 

And here's the thing; there's a word for all this. That word is "ableism". The word is probably new to lots of people reading this, but not to me. I bet many of you are thinking right now "Do we really need another 'ism'?". Well, yes, in this case, actually we really do, I know ableism is real, because I've experienced it.A lot. And everything I've just said is online and verifiable with a Google search. I did my research for this post thoroughly, believe me. 

And now I'm back to sounding like the evil spawn of Moe and Grumpy again, aren't I? Because nobody wants to hear this stuff. It makes people feel uncomfortable, maybe even a bit guilty, because the problems seems so huge when they're laid out bluntly like that. So it would be much nicer if disabled people would just go back to winning all those medals at the Paralympics, or just generally being heartwarming and inspirational and overcoming stuff, yeah? Having strong opinions and revealing ugly truths about systemic disadvantage is definitely out. The thing is, even when we are inspirational Paralympians, it's not really kosher. Wheelchair athlete Kurt Fearnley has stated that even after all his athletic achievements, and crawling the Kokoda Trail, he was called a whinger by many in the media, and the public, for protesting about the damage done to his racing wheelchair by airline baggage handlers. Now if Kurt Fearnley is any kind of a whinger, than I actually AM the evil spawn of Moe Szyslak and Grumpy Cat. From outer space. And proud of it.

I'm bring up the case of Kurt Fearnley merely to underscore how deep this attitude runs. And I know what Fearnley means. I've lost count of the times when talking about ableism that I've been either ignored, humoured and patted on the head ( and if you think that's a metaphor, think again ) to encountering outright hostility and being accused of that hoary old chestnut "having a chip on the shoulder". I've even been scolded, ( or in their words "advised" ) by quite nice, well meaning people, who I actually like most of the time, for not being "upbeat" enough and told that if I just gave off a more positive "vibe", nobody would be condescending etc. Because if you believe in the law of attraction, I "called that into my life", to learn a lesson. It's at about this point in the conversation that I start losing the will to live. The possibility that the other person may have needed to call an encounter with a confident, articulate disabled person into their life in order to break down a few of their stereotypes is apparently something much harder for most people to contemplate. And please don't get me started on people who try to tell me that if I accepted their particular brand of religion I wouldn't just be happy, I'd be *gasp!* CURED. Um, no I wouldn't. Faith healing is a crock. I'm not arrogant enough to claim I know much for sure, but I do know that. 

And here's where I call bullshit on the whole thing, because I'm tired of it. None, repeat, NONE of the systemic disadvantages I've just spoke of above were caused by disabled people, and disability itself is not caused by karma, a negative attitude or lack of faith. Disability is just a thing that exists in the world. Always has, always will.  Different belief systems will always have different explanations for it, and nobody really knows why it happens to one person and not another. Plus, you know, there's genes and environmental factors 'n' shit. I've been meditating for years now, and I think I have a fairly good handle on how your thoughts can influence your perception of reality, but that's a different thing from creating it. But I also know that what thoughts/ karma / attitude cannot do is alter the laws of physics. Gravity remains gravity, and a brick wall remains a brick wall no matter how you think about it. A wheelchair user will never turn a set of stairs into a ramp by smiling beatifically and beaming positive energy at it. And you can't make someone who is determined to treat you like a child because your body does not look or move "normally" change their attitude by sending them Love and Light. (Trust me, I know. Somewhat embarrassingly, I actually tried that last one in my younger days.) 

Now, I'm a grown up. I understand that it's no one's fault that I have Spina Bifida. Of course, I occasionally feel frustrated when my back hurts, or I can't move as quickly as I'd like. But being a grown up, I know that it's my job to deal with it. That's where I've found meditation and a few other spiritual practices quite helpful. Of course, not everyone deals well with disability, and they are angry, but hell, there are people out there who are angry about cellulite, or male pattern baldness, or traffic jams, or the existence of Justin Bieber. People are just people, and we all have a huge range of screwball emotional responses to the oddest of things. People with disabilities as a whole are actually not more prone to negativity or bitterness or taking offense than any other sector of the population. ( Or heroism, by the way, but that's a subject for another post ) - that's bollocks. The reasons why some individuals don't do as well as others are complex, and are often tied to lack of support, social exclusion, and economic disadvantage, (that pesky sociological stuff again ) combined with the difficulties presented by their biological impairment. Every disabled person has a complex and unique relationship to their impairment, but to be blunt, it's frankly none of your business how "upbeat" or "positive" someone is about it. To paraphrase a well worn slogan from the feminist movement; No disability, no opinion.

The discrimination that helps to hold disabled people back from full participation in society is something that we are all, responsible for, albeit most of us passively. If we have created this at all, we have created it collectively, and it can only be dealt with collectively. That may mean culturally eschewing the feel good aesthetic for a while until ableism is taken seriously and the problems we face given top social priority and dealt with affectively. Because here's what I think: I think that the current spiritual pop culture desire for feel good optimism has a cost. That cost is the voice of the activist, the bolshie spitfires who actually get shit done and move society along (sometimes drag it kicking and screaming) into a more enlightened phase. And when activists are silenced our lives are all a little poorer for it. You may not always like the way in which they go about what they're doing, but at least they are doing it. They are not whingers or pessimists or guilt mongerers. Far from it. Think about it - why would anyone engage in an any kind of activism if they didn't believe that people were essentially good, and that it was possible to enlighten and inform the community so that progress can take place? But unfortunately, that progress sometimes means looking uncomfortable truths straight in the face, seeing our own passive complicity reflected back at us, and being willing to help by engaging in ethical practices like challenging ableist language, checking your own assumptions, not using accessible parking spots and bathrooms, and not sharing that next heartwarming but brain stupifying meme on facebook. And really, really listen the next time someone with a disability goes off on what you might consider an angry rant about accessibility - especially if it hits home because it's your workplace, etc - or any other subject. Be still, be present, and truly engage with what they are saying. You might just be surprised at what you find out. And together, all of those things are what truly creates good energy and connects us all in a cycle of intelligent, ethical concern for one another's well being, and our own. That's the truly spiritual course of action. 

Seven things you should probably never say to someone with a disability.

All of the following is based on things that have actually been said to me. Yes, that's right, I haven’t made a single thing up to be funny, although I hope they are. My emphasis is on physical impairment, mainly because I’ve got one. The tone of this post is unapologetically spiky, but it isn’t about being accusatory, or suggesting that all non-disabled people say these things all the time, but about recognising unhelpful opinions and behavior, and about helping people to be a little better informed. This post is written with tongue very firmly planted in cheek (hopefully not with foot planted in mouth!) in the hope that at least some of it will make you laugh, and that all of it will make you think…

First cab off the rank is:
“I don’t see you as disabled.”
Usually said by people whose uncomfortable body language, worried facial expression, sugary tone of voice, and compulsion to hover over me like some demented mother hen indicate that disabled - with all the baggage that we are accustomed to attaching to it like "childlike" "fragile" and "incapable" - is precisely how they see me. Go figure...

Closely related to:
“You shouldn’t refer to yourself as disabled.”
Firstly... Um, I’ll refer to myself however I bloody well please, actually. Secondly, the right of marginalised people to define themselves on their own terms is one that I will defend relentlessly. I've been able to read a dictionary for a very long time, people, and I know what the word means. And yes, I know that for lots of complex historical and social reasons, it makes a lot of people squirm. When I, and and increasing number of well informed, politically aware people use the term, we are doing so as an act of defiance against those stereotypes, not in deference to them. I even refer to myself as a Crip occasionally, a term that's fairly common among those of us familiar with the disability rights movement. I like it. It's short, it's snappy, and if I'm being perfectly honest, my Evil Twin enjoys the consternation it frequently causes amongst less clued-in types.

“So can you, like, have sex and stuff?”
Oh boy. Really, seriously, am I missing something??? Is there some strange parallel universe in which it’s socially acceptable to casually sidle up to an able-bodied person and ask intimate questions about their sexual experiences? Right, no, I didn’t think so. So then why is it okay to ask a disabled person? No, I don't know either. The weird thing is, it's mostly strangers who ask this, rarely someone I am actually about to get naked with. Mainly because I don’t fancy stupid people (well, okay, with one or two spectacular exceptions, but we won’t go into that...) Oh, and while we're on the subject, anyone who is dumb enough to actually ask that question of me automatically loses any chance they may have had of finding out, if you catch my drift...

"You can overcome any obstacle in life with a little positive thinking and/or willpower!!”  Actually, no, you can't. Much of the difficulties that come with having an impairment stem from poor physical access, ingrained stereotypes, and social structures that serve no-one's highest good. So, for example, if you're a wheelchair user, you simply can't get around the quandry of of an inacessible shop, cinema, bus, or pub, by smiling sweetly at it and thinking positive thoughts until it obligingly goes away. If you think you can, I suggest you stop reading right now and go join the Easter Bunny having tea parties with the fairies at the bottom of the garden. Sometimes what actually needs to happen is a good, old fashioned angry letter to the council. Or a pointed rebuke to that irritating person who has just pat you on the head. Again. Or the recent political activism to bring about the National Disability Insurance Scheme. To deny that is to deny our quite legitimate frustrastion at the very real marginalisation and inequity that is part of the fabric of our daily lives.

“My ex-boyfriends-next-door- neighbours-cousin’s-budgie had that and s/he was cured by *deep breath*: eating 17 kilos of anchovies/having dangerous experimental surgery/joining an ashram/going to Lourdes/chanting mantra/joining a cult/taking a positive attitude (See above!)...” the list is literally endless. Look, here’s the thing about disabilities - they are usually pretty permanent. It took me a long time to come to terms with that as I was growing up, but now that I have, I focus my attention on getting the most out of life, not fretting about a cure that will probably never happen in my lifetime.

“Here, let me help you with that...”  
IF it’s immediately followed by grabbing the object I’m carrying, or even worse, grabbing ME, coupled with an apparent inability to countenance a polite “No, thank you” from one of the Less Fortunate. Don’t get me wrong here; practical, discreet assistance is sometimes needed, and much appreciated when given. Just don’t expect me to be duly grateful for something which I didn’t need, didn’t want, didn’t ask for, and in fact, have actually refused. It undermines my independence, which I have to fight to maintain on a daily basis anyway, and it takes away my right to make decisions on my own behalf. So it’s not helpful. Nor is it kind. Really it’s not. Besides, I have a mouth. Quite a big one actually. So if I actually do need help, I’ll ask for it, thanks.

“You’re so brave/such an inspiration!”
I’ve lost count of the amount of times someone has said this to me, usually only seconds after clapping eyes on me, and usually in a supermarket, post office, or chemist. Quite what's so inspirational about buying tampons escapes me, but that could just be me. I’ve never climbed a mountain or run a marathon in my life, and furthermore I have no intention of ever doing so. No Paralympic gold medals for me, I'm afraid. Frankly, I'd sooner spend three days tied to a cactus while being forced to listen to Nickleback, over and over again, or some other form of torture that is probably rightly outlawed by the UN, but I digress. Apart from the fact that the chronic overuse of Brave and Inspirational to describe any and all disabled people, all the flippin' time, indicates that most able-bodied people are inexplicably unaware how to use a thesaurus, seeing disabled people as always inspirational no matter how mundane their day-to-day activities may or may not be, means we can never just be ordinary. Or in other words, just like you. Just everyday people with real complicated lives, unique personalities, diverse talents. We are always different somehow, always The Other. Even when we're not.