What is it about disability that strikes such a deep discomfort in the average person’s soul? What is it about that word that makes us, in our heart of hearts, cringe and gasp and turn away? Why do we feel so compelled to sneak a surreptitious look at the carer and her troupe of six disabled young adults carefully selecting their weekly groceries, but we turn our guilty gaze away the moment they look in our direction?
For me it has been an almost visceral fear – fear of the unknown ‘other’, fear of causing offence with my curiosity, fear of the impact it would have on my life if one of my own were to be afflicted, fear of the weakness in myself that has always stood in awe of those who choose to care for the severely disabled. The fact that my troubles and trials become so glaringly petty when faced with disability as a comparison has often made with cringe with self-disgust and disgruntlement all at once. How dare their problems take the wind out of my sails!
It’s not that I have never had contact with disabled people – my mother worked for Homecare with a couple who had debilitating cerebral palsy, but who were determined to have as independent a life as possible. It was a fairly regular occurrence that my sister and I would help out on shopping trips, chasing Greg in his motorised wheelchair or that we’d share a cup of tea with Anne, slowly learning to understand her speech. But, truth be known, I was always conscious of ‘acting normal’ with them. Somehow it never came naturally and, to this day, I am ashamed of that fact.
And then along came The Divine Miss A.
Many years ago, we swam together. I was always a bit intimidated by her because she was indeed divine, but she had a laugh that could turn any wall to dust and I loved her. When I was 15 I got lost in the Chronic Fatigue quagmire and then went and broke my neck, so I was out of the swimming world for a while. She swam to great heights and by the time I came back to the pool, she had suffered her own string of career-ending misadventures and we never spoke to one another again.
Then one day I received a message in my Facebook inbox that said something along the lines of, “Do you remember who I am? I promise I won’t stalk you if you’d rather not talk to me…”
Did I remember her?! My mother still talks about her gold shorts! What was 20 years ago was rekindled in an instant and I was thrilled to hear that she had two children of her own. And then she told me about her children and my heart stopped. I was faced, at close quarters, by all the guilt-laden fear I dared not look at, and out of love I had to look, feel and examine it or lose. Simple as that.
And what did I find?
People. Only people. Human beings like me and you and every other person on the planet.
I discovered that:
It is the label, ‘Disabled’, that creates the fear, the sense of ‘otherness’, the separation between ‘us’ and ‘them’ in the same way that ‘homosexual’, ‘Jew’, ‘asylum seeker’, ‘negro’, ‘untouchable’, ‘Afghan’ or any other label has stirred fear and suspicion through the ages. And they are all unnatural labels created with a focus on division, separation and classification rather than a focus on what commonalities bind us together as the human race.
I discovered that:
Beyond the label lies a heart and a shining soul that needs love and affection and fun and stimulation as much as every other human being. People, some with minds trapped in bodies that don’t work effectively, some with bodies that out-grow their minds, some who cannot say what they feel and others who express every fleeting inner sensation with abandon. But all thinking, feeling, willing people imbued with the same life force as you and me.
I discovered that:
The unconditional love required of carers like The Divine Miss A, while completely awesome, is not unattainable. It is not something to be intimidated by or afraid of because we, The Average, have the capacity to love without expectation of return and without end as well. What makes us afraid is our own tendency to buy into the labels because it’s easier, because it allows us to dwell on our own relatively inane worries and feel justified in doing so, because it allows us to avoid being confronted with the extraordinary and unsettling diversity of human experience. But we can transcend our little homogenous box and learn what love is really about… if we choose to.
And I discovered that:
We are all afflicted in some way by something – here is the woman whose mother abandoned her when she was five, there is the man whose father was an alcoholic, here is the person who is a gambling addict and there is the person who was molested as a child, the mother who works such long hours that she barely knows her children, the father who is treated with suspicion because he stays at home with the kids… People with a disability are just people with their particular affliction out there for the world to see. Imagine if we all had our afflictions on display; who would be the ‘other’ then?
The Divine Miss A has shown me that, in truth, I have been the one disabled by my ignorance and fear.
And I thank her for showing me a whole new world of beautiful people to listen to, to learn from and to love.
The Divine Miss A has nominated me to be a champion blogger/tweeter/status updater at the National Disability and Carer Congress. PLEASE vote for me here so I can keep you updated on what happens there! All you have to do is follow the link, enter your name and email address and select “Nadine” (at number 35) as your champion. Simple.