Wayne’s world: a friend and carer’s perspective

Wayne’s world: a friend and carer’s perspective

Providing support for a blind friend is about more than making sure he avoids obstacles, says Daniel Levene, as he prepares for the onset of his own blindness.

When Wayne describes the day it’s like he is describing a Rothko painting. “It’s red with a thick band of yellow across the top and a thinner band of aqua just below that.”

I tell him it’s beautiful, maybe better than it really is. “It is really like that,” he reminds me. I nod. It’s a reflexive nod, cut through with a certain sentiment of sadness.

Light perception

Wayne is a ‘total’, regarded by medics as having no light perception at all. He disagrees. He says there is light, often too much. Sometimes the flashing lights and spots and bright bands make him dizzy. I may have all that to look forward to. I’m currently a ‘partial’. Depending on what eye I look out from I am between 40 to 25% blind. I can see what Wayne cannot. That’s how I came to be his part-time carer. Though I will not be able to be his carer for too much longer. My condition dictates that I will be almost fully blind within 5 years.

On days out with Wayne I often observe how people react towards him. And it is still not uncommon that I observe things which leave me quite speechless. Those curious glances people cast his way, like he isn’t quite right, like his visual impairment must hint at some dark psychological disorder as well.

Then there are those who avoid his tapping cane, yet do so in such a way as to demonstrate that it is not really the cane they are avoiding but the man holding it. Children, but children old enough to know better, stop and stand and stare. Sometimes they follow him along, staring up into his eyes. They study how the lids are closed over and slightly in-turned, how his eyes move about if they are computing and feeling out his universe in some other way. To be curious is no bad trait; to mimic is. They run away laughing, walking and bumping into things and feeling about like they are lost in the dark. But, surprisingly, it is neither children nor teenagers who are the worst. The worst are young adults, anywhere up to 25. Their remarks and impersonations are that much more vicious and hurtful as there is a matured intelligence behind it. They fully comprehend the potential cruelty and upset their behaviour may cause.

Heartless discrimination

It is when I see such heartless discrimination that I think about the world and wonder just where it goes wrong. I tell Wayne about these observations, the adults. I vent what I see and cannot help it. Wayne waves them away. He is right to wave them away, only sometimes I wish he wouldn’t; sometimes I wish he would feel the same injustice and sadness that I feel. But still, for the most part, I have learnt to keep my observations to myself.

Firstly, if I did not, I’d speak of nothing else, and, secondly, my observations often seem to me as being quite selfish in origin, observing all these little nuances of expression and behaviour in people while I still can. Maybe something else will replace that? Who knows? Wayne says, “What good will it do you to know that, to know what people think?” It’s a valid question. It’ll do me no personal good, but maybe if I react in the correct way, a proactive way, it will do others good. Maybe if we all pointed out the injustices we see then it would put pay to the last lingering vestiges of bias and discrimination that blind and disabled people face.

When Wayne and I walk, we walk arm in arm. Wayne doesn’t really require that as he is fully competent with his cane and nothing much goes by without him being aware of it. What it does do is reinforce the need for human contact, the importance of proximity to desensitise people of many presupposed notions and ideas, to remind them that an arm is an arm and a person is a person, skin is skin and eyes are eyes whether they work as they were intended to or not. There is nothing to be terrified of, nothing to laugh at, nothing to be curious about. It’s why I feel it is important that Wayne makes a stand. But then I think and reflect and he does make a stand, maybe the biggest stand anyone with any impairment can make: he lives his life. He is out there for the world to see. He doesn’t judge others and he brushes off any judgement of himself.

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