'He saw me when I was born, but his sight faded after that' – the reality of growing up with a blind parent
When she was growing up, everyone used to tell Anna Shiels-McNamee her dad was nothing short of amazing.
This confused her. To Anna, her father seemed pretty ordinary – he worked 9-5 and watched Coronation Street in the evening.
After a while she realised the word ‘amazing’ was code for her father’s disability – his blindness.
“I used to think ‘he’s not amazing, he’s just blind’,” she said.
Anna’s father John was diagnosed with Retinitis Pigmentosa (RP) in his teens; a degenerative condition which caused him to gradually lose his sight from his early 20s onwards.
RP is a rare, genetic disorder that involves a breakdown and loss of cells in the retina—which is the light sensitive tissue that lines the back of the eye. In Ireland, it is estimated that 1 in 4,000 people have RP.
“My dad saw me when I was born,” Anna said. “But he was pretty much blind after that. With RP your peripheral vision goes first. It’s like you are seeing through a tunnel, then it fades. It was passed on from his parents to him.”
Anna first became aware of her father’s blindness when she was seven years old and guiding him around her primary school.
“You start to notice that no other kids are doing it.”
To others John’s blindness was met with a degree of incredulity, but for Anna and her family, it was normal to the point of mundanity.
They often assumed all dads were unable to do things that John couldn’t – such as drive a car.
As a result, Anna and her siblings never viewed their father as someone who needed sympathy, or someone they should treat differently.
“It was so normal to us. We used to leave our school bags on the floor … It would drive him crazy, he was falling over and roaring; ‘You do know I’m blind?!’ And we would just roll our eyes and say ‘Uugh dad is so annoying,’” she said.
While her father’s blindness was “hardly acknowledged in the house”, everyone appeared to register it outside the confines of their home.
People would stare, but it wasn’t until she left home as an adult that she realised how unusual it was to grow up with a blind parent.
I would mention it in conversation and people would say ‘Oh my god – you’re dad’s blind? That’s pretty traumatic.’ And I started to think ‘Oh right.’”
Looking back, she realises that “there were times we were mean to dad but I think that’s just what kids are like.
“You haven’t really had your feelings hurt enough to properly empathise with people.”
Last year, Anna (31) wrote a play about her childhood titled My Dad Is Blind.
The play centres on a dysfunctional relationship between a blind father and his sighted daughter, as they try and navigate their way through life.
It uses audio recordings, and real life memories to explore all the awkward, embarrassing and ridiculous moments in a father daughter relationship.
She won Best Production Award at the Dublin Fringe Festival and is now touring around Ireland for September.
Anna hopes it will “challenge people’s perceptions, specifically our default setting being to infantilize people with disability”. (Read: constantly calling people amazing or inspiring.)
She also hopes it will encourage a more honest dialogue about visual impairment and other disabilities.
“People are so righteous about what you should and should not say,” she said.
“When I was younger people would ask me ‘Will it offend your dad if I ask him if he has seen that movie?’ I would say ‘No because he’s not an a**hole.
“There should always be an open dialogue. But people are so PC about how to approach the subject that it can shut down conversation.”
The action of her play hinges on parent child relationships. In the year since she wrote it, that area may have taken on an added significance as she is now five months pregnant with her first child.
She’s approaching her pregnancy with a similar pragmatism – it’s not a subject that needs to be swaddled up in bubblewrap or hidden away.
“As an actress there’s an assumption that you’ll go into hiding during your pregnancy. In the arts there’s a real feeling that if you want to have kids, you can’t get the jobs.
So I’m exited that I’m an actress and doing a show, and showing that you can work and do all this. I’m really happy about that.”
My Dad is Blind runs 3rd – 7th September – Civic Theatre, Tallaght
11th September – Town Hall Theatre, Galway
12th September – VISUAL, Carlow
18th September – Ballina Arts Centre, Co Mayo
19th September – Wexford Arts Centre
20th September – Ramor, Virginia, Co Cavan
24th September – glór, Ennis, Co Clare
26th September – Watergate, Kilkenny
28th September – An Grainán, Letterkenny, Co Donegal
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