Ever since she was a teenager, Minnie Baragwanath has come to realise that she probably misses much of what comes through her letterbox each day. But in August 2015, the legally blind Auckland woman came very close to missing the most important letter of her life – a note advising that she was due for a mammogram.
If it wasn’t for the eagle eye of her assistant, who happened to open and read it, chief executive Minnie could well be dead. “It’s actually that basic – my survival came down to one letter,” tells the 46-year-old, who began losing her sight as a child due to Stargardt disease, which causes progressive vision loss.
The routine mammogram, Minnie’s first ever, detected a lump. Within weeks, she underwent a mastectomy and reconstruction, and began radiation therapy.
Numerous complications followed, including a post-surgical infection, an embolism in her lung and pneumonia, all of which left her fighting for her life.
“I remember sitting in the waiting room after I’d been called back in for my results and I had my brother with me. It’s probably very bad taste, but we were joking about who the poor person would be that had the job of telling the blind girl she’s now got cancer,” laughs Minnie, who admits humour proved useful in those dark moments.
“I had a feeling it was going to be bad news, but I could never have believed how terrible things would get.”
Minnie’s cancer experience was often frightening and she feels strongly that the health system isn’t set up well for New Zealand’s most vulnerable people. It was particularly confronting given she’s the founder and CEO of Be. Accessible, an organisation that focuses on raising awareness of disability and helping organisations provide for people with access needs.
She’s worked tirelessly for the cause over the past decade and in 2013 received the Sir Peter Blake Leadership Award. A year later, she became a Member of the New Zealand Order of Merit. Minnie was also recently named as one of 10 finalists for New Zealander of the Year.
“I was experiencing breast cancer just like any other woman, but I also had my Be hat on,” tells Minnie. “I have a constant need to think, ‘How can I take this experience and turn it into something that leads to wider social change?’
“But it suddenly became very personal. After being told it was cancer, I was handed a huge pile of information to read and obviously there was no way I could do that.
You try not to take these things personally, but you can’t help but wonder why my needs, and the needs of many other people, aren’t being valued.
“Everything seems to be approached from a viewpoint that we can all see and hear and move and think at the same speed. It’s not how a caring society should work.”
Minnie, who had to rely on friends and family to decipher the information, was staggered to find that the fact she’s blind didn’t seem to register on the various departments’ systems.
Toni Atkinson, the Ministry of Health’s group manager of disability support services told Woman’s Day that health boards work hard to meet the needs of people with disabilities, but improvements are “always possible”.
Nearly 18 months on from the day she received her shocking diagnosis, life is finally brighter for Minnie, who has six-monthly mammograms to check her cancer hasn’t come back.
She’s returned to work, is able to socialise again and is gaining back her energy. And unsurprisingly, much of that energy is being directed into better accessibility in the health system.
“We’re not talking about huge changes. It’s about making things less frightening, more welcoming and easier for everyone – not just those of us with disabilities.”
For most people, becoming blind and then getting cancer would seem a cruel blow, but this inspiring woman has a slightly different attitude to life.
“It has been a defining time. It’s not like I would’ve wished for this, but all sorts of amazing things come out of these experiences. I’ve always lived outside the bell curve and I like to think there’s a reason for that. If I can make just a small change in some way, then I’ll be happy.”
