How does it feel to be ‘other’? Someone different, outside the norm. An amputee, or someone born without a limb. A child with Down syndrome, or with autism. A newcomer to a community, a migrant, or a refugee. A person of colour. A person who identifies as LGBTIQA+. A person who is not understood by others, perhaps even feared.
In my twenties, long before I was diagnosed with MS, I had an irrational fear of being paralysed, a paraplegic.
I knew nothing about what it would be like, how I could bear it.
Then in the early 1980s, I was given responsibility for administering a Commonwealth government disability funding program, in addition to the large portfolio I was already managing. It was a huge extra burden, but I had no say in the decision.
As part of my induction, I was given some training in ‘normalisation’. These were early days in the thinking that people with disabilities had rights the same as everyone else, to live and participate in the community rather than be restrained in institutions.
As part of that training, I was required to spend 24 hours with a young man diagnosed with cerebral palsy. By his side, I would experience life from a wheelchair of a person who was paralysed and unable to speak.
The experience opened my eyes and changed me. One thing sticks in my memory – waiting for a lift. My companion couldn’t take just any lift, he had to wait for a large one to accommodate his wheelchair. It was in heavy demand, and we waited for perhaps half an hour.
I realised then that there was a nil value placed on the time of a person with a disability. He wasn’t working; he didn’t have to get anywhere urgently. He could wait. I felt the cruelty of his life.
Much has been written about how, as we age, we become invisible. Waiting at a counter to be served, struggling out of a bus, grappling with new technology. When does ‘older’ become ‘other’?
One answer springs to mind – in an aged care facility. Not in all cases, of course, but there’s a risk. The person with dementia staring vacantly into space; another calling out for attention, someone making strange noises. We are afraid; we do what we’ve come for and hasten to leave. Yet I can think of a friend or a family member visiting a loved one with intense loyalty, each day spooning bland, pureed food into a waiting mouth. Fighting against the risk that this person might become ‘other’.
Thanks to the principle of normalisation, people with disabilities are much more visible in the streets of our communities today. Compared with the 1960s, we know far more now about everything, thanks to people who share their stories in books or the media.
I’ve written in the Prologue of my memoir:
Now, I have grandchildren of my own. I love how unselfconscious they are, chattering as we cross the street, me walking funny. They don’t care how we look.
And as I move about the local streets in my mobility scooter, I don’t feel invisible. I’ve found that Novocastrians tend to be strongly connected to grandparents, and there is real respect for older people. There will always be exceptions of course, but in my experience, this is the norm. Not ‘other’, but ‘our own’.