It's time to end this relationship

Updated: Jun 10, 2019

Recently I read the 20 Things Every Parent of Kids with Special Needs Should Hear, by Dr Darla Clayton. It's a good read. I particularly enjoyed #4:

There are many reasons I enjoyed this post so much. It is caring and forgiving, not a bash; there is parental confidence, without condemnation of experts; it talks to hope and ambition, not unrealistic extremes; and the best part? I didn't catch a hint of any pity violins. My pet hate is pity and, in my opinion, the relationship between disability, pity and charity is too strong. I'm not talking charities, as in not-for-profits who do really good work, I'm talking charity as in societal attitude.Caring shouldn't be confused with pity or charity.


I'm not much of a movie watcher around topics of disability because of the inevitable dramatisation that somehow leads into a pity party. Where's the reframe, the reality, the humor? I enjoyed Netflix's Atypical, particularly the relationship between the main character and his sister, and a number of years back we happened across the French Untouchable. The Telegraph review was 'Untouchable is not really a film about race, or disability, or anything other than friendship, perhaps that's why we enjoyed it so much.


I suspect the commonality between all of the above is the combination of care and humor. Human rights is a serious issue, and the ablism that people with a disability feel on a daily basis is no laughing matter. It's just that I am committed to keeping conversations open. We can influence and challenge only when society is listening. In my experience anger repels and humor attracts. In a sector such as ours, there is much to feel confused, frustrated and angry about; reframing experiences into palatable, bit-sized pieces of light-heartness is more likely to keep channels of communication open. Don't get me wrong, I have fallen victim many times to dishing out a good rant or verbal bash. It's just that I know it's not right as soon as the dust settles and I'm back in control of my emotions.


A couple of posts back I quoted a study by a team of scientists at Princeton, led by Uri Hasson. The study found that when we listen to stories told by others and understand them, we experience the exact same brain pattern as the person telling the story. This means that if we are the story teller, we can influence others to feel the same as us.


James Clear, the author of Atomic Habits, argues small changes in habits and routines leads to goal attainment. Perhaps the goal is to separate disability from pity and end it's unhealthy relationship with charity. Tom Ziglar (son of Zig Ziglar) says we can get to where we want to go by replacing bad habits with good habits. If the bad habit is pity, I would argue the good habit is care. We care because it comes from that authentic place called caring; defined as attentive, considerate, thoughtful.


So my thoughts this morning are many. First and foremost, we should be telling stories. Our stories must be engaging; our listener must be listening. We want to share stories of our heroes, like Dr Darla Clayton, and their real-life adventures, like Atypical and Untouchable. In our stories we should replace pity with caring and challenge the relationship between disability and charity. There will be a time in the future when extremist portrayal of super achievements or dramatizations might be palatable, and maybe even entertain, but for now my thought is, its all too soon and all too raw.


We need realism, it's been lacking for a long time. We need understanding of those who do not have lived experience, something that's been missing for an eternity. We need a little humor to balance the pity we've been drowning in for far too long, and we need all of this so our heroes can build a strong, healthy self-image. If all it takes is telling engaging, real-life stories, I firmly believe we can do this. I honestly do. Whose in?

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