Family

Raising a child when you have a disability: a mum with cerebral palsy speaks out against discrimination

''It would be a great day when I'm not seen as such an anomaly. I'm just a 35-year-old mother like all my other friends starting families.''

By Karyn Henger
Images: Angie Humphries, Bauer Studio
Renata Kotua has had a few knockbacks in life.
The 35-year-old health science student and mother of one from Auckland was told by a teacher when she was in her teens that she was wasting her time considering being a doctor. Occupational therapists advised her she would never be able to swim or drive. And when she became pregnant with her daughter, strangers approached her in the street to ask her how that could have happened.
The misinformation and discrimination sent her on long and winding detours in life. She tried many jobs, for example, before realising that her restlessness was perhaps down to the fact she wasn't doing what she really wanted.
She stuck to public transport for years before meeting a man with no arms and legs who told her if he could drive with his chin, there was nothing stopping her from getting her license.
And she became masterful at hiding the hurt when 'well-meaning' women questioned her ability to look after her child.
But the detours eventually all led her to the same place. It was the naysayers who had been wasting her time.
Renata Kotua
Renata Kotua has cerebral palsy, a physical disability that affects muscle control, reflex, posture, gait and balance. It's caused by damage to the brain during pregnancy or shortly after birth. In Renata's case she was deprived of oxygen at birth.
While Renata has a pronounced limp and limited use of her left hand, people wrongly assume she also has an intellectual disability. She hopes that by sharing her story, awareness will grow about her condition, and people will better understand that you can get it completely wrong when you make assumptions about someone at face value.
Growing up in a small community in Hongoeka Bay, Plimmerton, on the Kapiti Coast, Renata had never felt any different to the other kids.
"My parents didn't wrap me in cotton wool," she says. "I was the oldest of two so I set the benchmarks."
It wasn't until she hit her teens that she began to realise not everyone viewed her in the same way.
At high school, comments made in particular by a science teacher had a profound effect on her career path.
"I loved science and told them I wanted to be a doctor. They said I'd be endangering people's lives and that if by some miracle I made it through med school, who would hire a disabled person as a doctor?
"I was 15 when I got this feedback. When you're 15 and an authority figure tells you that, you believe them. So I thought okay, well, I'll focus on my other interests then."
She turned her attention to linguistics and languages and, after gaining a university degree, headed overseas to teach English. But she never persevered with anything too long. Returning home she became a make-up artist, then a photographer, then a youth development coordinator for CCS Disability Action.
It's only been in the last couple of years that Renata has "slowly found my way back".
She has returned to university, where she's studying health science, with the view to becoming a doctor.
She's also taking swimming lessons alongside her two-year-old daughter, Te Ākau, after meeting others with CP with symptoms more severe than hers, who know how to swim.
And parked in her driveway is her Ford Escape – which we can attest she manoeuvres with confidence. It has been modified with a steering wheel "spinner" that enables her to react more quickly.
She is pragmatic about her limitations.
"I'm not holding on to my independence fiercely enough for my daughter to miss out on anything. If there's something I can't manage I'll ask her dad to take her or help her, or her grandad."
Renata is a single mum but her former partner is a big part of their lives, and co-parents Te Ākau with her.
"At gymnastics, for example, she likes to walk across the beam faster than I can walk. With swimming lessons I only started to learn to swim this year so her dad takes her to those.
"I make sure she gets what she needs if I can't give it. My daughter is at the core of everything."
If there's one thing Renata would do differently if she could rewind the clock, it would be to reach out to others with disabilities sooner than she has.
"When I was younger I felt it was important to be as normal as possible so I didn't talk to people with disabilities.
"If I had, I would probably have met others who'd been told the same things as me and found ways to overcome them. Like the man who had no limbs who could drive. After meeting him I rang a driving school and found a guy who was willing to teach me.
"I did myself a big disservice by not acknowledging my disability, but it has taken me a long, long time to accept it - and I still cringe when I see video footage of myself walking."
But from those without disabilities, she'd like to see more open-mindedness.
"I'd just like to be treated as a normal person, rather than singled out. It would be a great day when I'm not seen as such an anomaly. I'm just a 35-year-old mother like all my other friends starting families."
She appreciates that people think they're being helpful when they slow their speech down to talk to her, or offer to lift her child out of the pram, or even pay for her groceries. But she finds it patronising, and only one step up from being ignored, which is what one pair of sales assistants did in a baby store when she was eight months pregnant, shopping for prams.
"I think people are often afraid or they don't know what to do. Some of them register shock; they pull their kids away which teaches their kids to be scared of anything different. Whereas if they just let their kid come up and say 'hey lady - why do you walk like that?' then I get the chance to say something."
What she really wants, though, is: "Just look me in the eye and say hello, that's all that is necessary.
"I would say, having a disability, I've developed a thicker skin," she reflects.
Her instinct is to shoot back one-liners when she is asked questions like is she sick of 'hobbling like that', how did she 'actually' get pregnant or how does she get herself and the baby to the shops? For the record, just like the rest of us - by putting her child in her car seat and the pram in the boot, driving there and then unloading the child and pram.
"But I no longer say them with anger. I just flat-line it, as I want them to reflect on what they've said."
At the moment Access Alliance (an organisation lobbying for inclusiveness for people with disabilities) is undertaking a campaign to raise awareness around accessibility and inclusion in New Zealand for people with disabilities.
What Renata wants us to remember is that greater accessibility for people with disabilities is not just about adding ramps and handrails to building entrance ways.
"Saying disrespectful things impacts me so much more than the aisles not being wide enough in a store."