Friday, 1 August 2014

The Murky World of Inspiration and Disability.


Inspiration has become a problematic notion of late. I think it is a rarer quality than what popular media would have us believe. Celebrity and the creation of personal wealth, are really all that are needed for to be labeled inspirational. Personal success, rather than how we improve the lives of others or leave the world a better place on our passing, our measure for inspiration and aspiration. And we focus on socially visible action, frequently missing the mark on identifying those who may be far more worthy of the title, but are the quiet achievers far away from the public eye. The word inspiration, like brave and hero, are now so overused in the mass media as to become meaningless. And when it comes to disability this becomes even more problematic.

I watched Stella Young's TED Talk discussing Inspiration Porn and being seen as inspirational simply for being disabled recently (transcript available here) and have read other pieces she has written on the topic. Much of it resonates with me. I watched her and the UK's Francesca Martinez, on morning television discussing the same issue today, and once again found myself nodding along.



Today I read a piece by New Zealander, Red Nicholson, which approached the topic from a slightly different angle and whilst there were parts I wholeheartedly agreed with (ie I am uncomfortable with the self-appointed inspirational status of some in the community. You may aim to inspire. Others may tell you that you inspire them. But you don't go around shouting to the world "Look at me. I am inspirational.") there were others that challenge my ideas on inspiration.

Nicholson's piece and Young and Martinez's views all partially fit into my ideas around inspiration and disability. But none fully hit the mark for me. In truth, I'm not sure what that mark is or if I'll even come close to finding it by the end of this post. It's a complex and evolving issue for me as I move from able-bodied living, to illness, to invisible disability, and now life with visible disability and a degenerative neurological disorder which is making it's presence very felt.

The wider public loves nothing better than an inspirational disabled person. Not just those that climb mountains, Young's Supercrip, but even a more everyday beacon of disabled inspiration.

Having been congratulated for buying milk at my local supermarket a few years back, I am well aware of the ridiculous idea that my simple daily existence is somehow inspirational. I can tell you right now I didn't feel very inspirational buying that 2litre of low fat. I did feel peeved that we had run out at home and I still hadn't had my morning cuppa. I may have even cursed the name of my offspring and my husband, who's finishing of said milk, led to my drive down to buy some that day. I'm not sure that attitude fits well with the inspirational status bestowed upon me in the dairy section by a little old lady exuding over-exaggerated delight in my achievement.

Part of the issue is that many people expect so little of the disabled in our society that simply buying a bottle of milk does becomes inspirational.


You managed to buy milk? Who knew that someone like you could do something like that?

Part of it is based upon the idea that disability is something that must be overcome

Would she have exclaimed at my amazing dairy purchasing powers if I had been without my walking stick and uncoordinated shuffle that day? I think not. In fact, given I have purchased thousands of litres of milk prior to becoming ill and never, in all those years, had a single person walk up to me and remark on how inspiring my purchasing skills were, I'd say no. And if a week later, on a day where I was a bit more steady and not requiring my walking stick, I would have bought that milk, she would have walked right on by without letting me know of my inspirational status. I would still be living with the same degenerative neurological condition of the previous week, but without the external markers of disability that would mark me as instantly inspirational.

The corollary to the inspirational disabled, is that there must be some equally uninspiring disabled. Those doing disability wrong. For that lady who was amazed at my ability to buy milk, will she berate or think less of another who is unable to head out to make such a purchase? Will she judge because the nuaces of that other person's disorder creates different impediments she doesn't understand. We see this already when people are berated for not trying hard enough, "Suzy over there can do it. Why can't you?", by family members, doctors and even other disabled and ill, when in truth they may already be doing all they can.

The way my disorder presents, differs greatly to that of others with the same disorder. Right now I can't leave my bed half the time and heading to the shops to purchase milk is beyond me. Am I suddenly less inspirational? I'm pretty stoked that I managed to shave my armpits and washed my hair today. Sure it's no inspirational diary purchasing, but it took far more effort and determination than buying that bottle of Paul's all those years ago.

So what are the parameters for inspiration?

Am I inspirational simply for daring to head out into the wider world to be seen?

Does that inspiration dissipate as I am no longer able to get out and about?

For those living everyday with disability that is not visible, are they less inspirational because you cannot see the pain or anxiety they live with each day?

Does the inspiration of being seen out in the world with visible disability, outweigh the fact that the same person kicks kittens or runs over the feet of old ladies for a chuckle?

The man in Nicholson's article has a reference point, his mother with MS. He sees inspiration in Nicholson being out and about because his mother, whilst he acknowledges her difficulties, doesn't get out and about. Does that make her less inspirational? To live with a progressive neurological condition is not easy. Sometimes simply finding the strength, physically and emotionally, to get up and keep going each day is a feat worthy of celebration. But these moments. The most common, understated and frequently overlooked achievements are not seen as inspirational despite their personal salience to those who experience them. The overwhelming belief in disabled inspiration only occurs in the public display. As if somehow simply being out and about means we deserve our picture on the back of a Cornflakes box.

Inspiration in and of itself is a good thing, but it shouldn't be seen at every turn, or in every disabled person simply by virtue of their presence. We are more than an item on display for the instant provision of warm fuzzy feelings. Without questioning why someone is or isn't inspirational, without learning about them as an individual as we would any other, we reduce a unique person to an object.

There are amazing, inspirational people with disabilities. I am lucky enough to know many. There are also people with disabilities who are complete arseholes. Because disability doesn't provide some magical protection against being a dick. (Hell, we don't even get a secret decoder ring. I'm still peeved about that.) There are also the vast majority of people with disabilities who fall somewhere in between, just like the rest of the population. Catch me on a good day and I'm Sally Sunshine, happy to discuss my illness and educate people about the challenges that many with disabilities face. Other days I simply cannot educate one more person, and I am likely to bite your head off should you ask. If I were to buy that milk and drop an F bomb because telling me that doing so was inspirational, when it is actually really patronising especially when said with a Play School voice and accompanied with a pat, would I suddenly lose my inspirational status? Luckily, I don't make a habit of swearing at old ladies and gritted my teeth thus keeping my shiny inspirational tiara firmly attached that day.

Just as with the able-bodied you can't simply judge by what you see. How we approach life and our individual stories cannot be determined in a single glimpse of a mobility aid or visible disability.

I am not here to inspire others by simply existing. Every time I am told I am inspirational for doing regular things, it has implications that go far beyond my own personal experience on the day, spilling over into the wider, yet ironically narrow, narrative on disability. I do not want others who may be unable to do something I can do, to be thought of as less, or not inspirational as a result. I am not overcoming, fighting, or living despite disability and illness. I live with it. It is part of me. It is my normal.

The carte blanche labeling of the disabled as inspirational is as problematic as the idea of the ever-smiling happy disabled, the alternate pity-worthy disabled, or the new politically-inspired, lazy disabled. We are not of one personality, or one mind. We do not all behave in the same manner. We are as varied as any other group of people. To be honest I hate the word Crip, yet for many with disability they happily embrace the title. I can't even get overly pfaffed about differentiating between people with disability and disabled people even though they are based in fundamentally different models, and I often just alternate between the two. And yes, we even approach the idea of inspiration from different perspectives.

As with the overuse of the words hero or brave, the ability to truly inspire is diluted and our ability to recognise it is lost when the label is given so easily and without any evidence beyond being seen. If inspiration is detected and announced simply because you can see a limp, a walking stick, a wheelchair, a visible difference of some form, then disability is the only requirement. The context and the story of that person and their experience is negated in favour of a quick and superficial criteria. Doing so also blatantly excludes those living with challenging invisible disabilities who may have equally valid claims to being inspirational but without the visual cue are overlooked.

What inspires one, will not inspire others. That is very much an issue of personal choice. Just as our reactions to being labeled inspiring will reflect our personal experiences and beliefs. But we do need to be more critical in our approach to deciding who and what is inspirational within the realms of those beliefs. It is in a person's uniqueness and deeds, the content of their character not their mere existence, that inspiration can be found. To act otherwise reduces a person to an object, and loses the amazing and beautiful diversity that can be found in the individual.

Michelle

10 comments:

  1. Very interesting read Michelle. I think it is annoying to those of us with disabilities, but hard for those without. I guess it is impossible to imagine what it is like to have a disability and hard to understand, i always laugh when my mother praises me for being brave. A little like you buying milk. Why? What is the big deal?

    Great read, as always, Michelle.

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    1. Thanks Kate. For me I don't see it as that complex for the able-bodied. It's about seeing the person rather than defining worth via illness or disability. It's about busting stereotypes. And a 'positive' stereotype is still a stereotype and equally unhelpful.

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  2. Michelle,
    I'm moving to OZ to be adopted by your family because you are too awesome and I have to assume the people around you are, too. ;) Seriously, your posts hit so close to home. My dysautonomia has put me in a rapid decline over the past year. When I went back to college in 2009 at the age of 41 and did 3 years of full time work and full time college while dealing with a parent who had end stage COPD (emphysema) and a friend for whom I was/am medical power of attorney, I had people tell me I was an inspiration. I admit that I was flattered and secretly thought, "Yes, I am one bad ass woman." When I graduated college in 2012 with one of my nephews, the graduation cards from my family were effusive with compliments on how I handled all of the above while also dealing with my own health issues. I'm a single woman and again, the adulation was welcome and much appreciated. But now that my body is revolting against the 3 years of bad-assery that saw me through finishing my BA degree in English and I've had to slow down dramatically, suddenly the support is no longer there. I haven't changed in my personality, but now I am somehow an imposter seeking attention and my family regularly uses the term 'enabling' when they speak of how they're reluctant to run when I call because I should be able to do my own grocery shopping. After all, didn't I do all of that and more for three solid years during which time my mom died. Yeah, I don't feel so inspiring any more, but even while I was accepting the accolades in the past, I didn't necessarily thing I was inspiring then, insane sure, but not inspiring. Sorry, I'm posting a book simply trying to tell you that I so appreciate your words that speak not only to me, but for me. I aspire to be like you.

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    1. Ah the complexity of inspiration. So sorry you've dealt with it like this Suzanne. It does take a lot to deal with so many competing demands and make it through and you should be proud of that. The big socially visible actions are amazing, but the day to day more 'quiet' management of disability and illness is no less amazing for being more hidden. I think for me I have a real problem with how this phenomenon affects those with invisible disabilities. Easy to spot doesn't mean harder or more difficult. There are people living with incredible levels of pain, with mental health issues that can't be seen but are still just as difficult to life with yet they are not afforded the same recognition. As I said it's a complex issue still working on nutting it all out. :)

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  3. hmmmm.... you've got me thinking. I am going to have to cogitate on this one a bit more before I comment. Off to watch the Ted talk. But before I do, does this mean that I can't tell you how much you inspire me anymore? Cos you do. It's not what you achieve or don't achieve that is inspiring, it is that you are an example of how someone who feels like shite can persevere. It's your ATTITUDE that I find inspiring. And your considerable talent and brains. I love that you don't waste them. It makes me want to not waste mine, something I was doing a lot of. Without your example it would have been diffficult for me to see what was possible, I was so mired in what was not. So shake your fist at me if you will, until I've seen this Ted talk and been otherwise convinced; you are inspirational. So there. :-P

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    1. No fist shaking and I appreciate the kind words. I'm not saying that a person can't be inspiring or that you can't tell them that they are (not that I personally think I am, but that's another post). It is considering why we think that. Living with illness and disability is not in and of itself inspiring, however a persons actions, the way they live that life, the things say or share can be very inspirational. But this is true of whether a person is disabled or able-bodied.

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  4. ah, yes, I see.
    It's the labelling, the wholesale homogenising of people with disability. I think Stella's term "Inspiration Porn" says it perfectly; the objectification of a group of people for the benefit of another. Yet, I think the root of it is correct. I think Stella does a disservice when she suggests that it isn't difficult living in a disabled. body. I think it can be exceedingly difficult. I think 'just getting up and remembering my name' actually is a huge achievement some days. And so, if healthy people see the contrast and find perspective for their own life, I think that is brilliant. I hope more people who have their health might not take it for granted. Yes, people with disabilities are more than their disability. 'Inspiration porn' only focuses on the disability, not the infinite variety of abilities in any given person. But I actually think it is okay. It's important even, for healthy people to take stock of their body priveleges...

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    1. And I guess that is what I was trying to get at. There is objectification with the homogenization. We are an amazingly varied group and each experience different challenges and deal with them differently. And people transform those inspiration porn memes into daily interactions which minimise and miss the true inspiration that occurs. There is also a big difference between my controlling my voice and experience (which I can do to a certain extent on this blog) and others projecting onto me simply because I'm sitting in my chair.

      Living with this disorder is hard, damn hard, especially at the moment. But it also isn't the end. The big bogeyman that gives rise to the "I don't know how you do it. I could never do it" comments. It is hard, there are tears but by giving it that level of power is a disservice to both ourselves and those who may find themselves in this position one day. Inspiration can occur without the emotive language often used when referring to disabled people. I hit a road bump healthwise, that isn't inspirational just something that happened. How I deal with that is a whole different kettle of fish. It's all about context and behaviour. You give perspective to others when you share your story, not simply because you are ill. Not simply because someone saw you out in a wheelchair. I admire you for your wit, your big heart and generous spirit and I would have even if I had met you before you became ill (although that does give a level of shorthand). I guess I don't necessarily see my experience as a reason for others to check their health privilege, or change their attitudes, I'm just a woman living my life because it's the only one I have. I would love if people would think more critically about why they instantly equate disability with inspiration but I also think that about the other end of the spectrum and the "pity" issue, I think that about a lot of issues really.

      I don't agree fully with Stella, Francesca or Red, and I kinda like that as it exemplifies how different we all are and that allows us to keep teasing out these issues. I also think there are different issues relating to acquired disability and life-long disability, visible vs invisible disability etc, that colour our perspectives. Okay brain is failing and I can't quite formulate my ideas. Bah hate that. I don't think I've said exactly what is swirling around in my grey squishy blob at the moment but it'll have to do. Have only just pulled myself back up off the bathroom tiles ;)

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    2. Hi Michelle,

      I've grown to intensely dislike inspirational talks -- the message I take from them is I'm a failure. Which is not a message I want to hear because I keep on trying, repeatedly, to make my life/health better, but this dys. crap has a mind of its own and I am hostage to it, always physically and often emotionally. Despite this I keep on trying in my own way. Inspirational talk is meant for the healthy of mind and body. It's not directed at those of us that have ill health already, but it does affect us. And at least in my case, inspirational talkers affect me negatively. As to those people who hear inspirational stuff and suggest to me that I could do better if only I wanted to try hard enough, I think my new response is going to be, "Yeah, maybe, but seeing as you have your health, the sky will be the limit for you, then."

      In late February you wrote something that I think might just answer your own question now.

      "Such sentiments reek of the privilege of health. They reek of false lessons. They reek of false security and small ideas. "I have my health," is the new statement of prestige and success. Up there with a new BMW, or a mansion in Toorak.

      The ill and disabled become inspirational for simply breathing, because others cannot understand how we continue on in a such a state of constant nothingness.

      Avoidance of illness at all costs. If you become ill you have not tired hard enough to avoid the nothingness. You must be judged. You should judge yourself. Bludger. Lazy. Worthless.

      Lies."

      Probably the answer is more complex than this but I don't have the brain power at this time (will I ever have it again?) to nut out the problems with the inspirational industry. I just liked your earlier take on this.

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    3. I agree with you Red, most of the popular inspirational dialogue is aimed at the healthy, again that idea of inspiration porn. For those of us living with illness or disability it is often a far more complex issue and our personal experience with illness gives us a very different perspective.

      Thanks for reminding me of my own words. I often forget what I write thanks to a sieve of a brain. We do not deal with illness and disability in a healthy manner for the most part. I don't have a problem with inspiration per se but I think the true essence is often lost in the way it is transmitted in the media and even on a lot of patient groups. It isn't as simplistic as it is often portrayed. And it leads to a lot of the blame issues in illness especially stigmatised illness eg lung cancer which instantly leads to thoughts of self-causation and blame (yet majority aren't caused by smoking), yet other forms of cancer are instantly brave/inspiration worthy. Argh. I could go on and on, it's an issue I think about a lot.

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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