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
