Nikki Frittmann is a notetaker and reader/writer for students with disabilities at AUT University. She has Spina Bifida and lives in Auckland with her husband and two cats. In this week’s guest blog, Nikki reflects on what it means to age with a disability.
I’ve recently celebrated my birthday – my 49th, to be exact. (No, please, don’t fuss – well, all right, if you must).
For me, there’s something about birthdays that end in a ‘9’ that suggests untapped potential. It’s as if the socially-desired goal of getting to the end of the ageing decade is giving you that ‘come-hither’ wink for a whole year, a sort of age-related “are we there, yet?” At the same time, there’s a sense of anticipation: “If you thought the last one was good, hang on to your hat – the next decade is going to be HUGE!” At my age, or so the psychologists say, there’s supposed to be a sort of ‘taking stock’, a reflecting on the past and looking forward to the future – or not, depending on the choices made in life.
I once read a great blog by Philip Patston, who described how, while on a Proteus retreat, he was sent out on an exercise to look at some Autumn leaves. He noticed how the once-green plants turned a myriad of colours as they dried up and died, and remarked how “decay has its own beauty”. I like that image.
Now, let’s face it, decay is a long, long way off yet. At 49 I’m hardly reaching for my Gold Card. I haven’t got, as the saying goes, one foot in the grave, nor the other on the proverbial banana skin (even though my cheeky husband likes reminding me that I’m nearly 50 – as you might guess, he’s younger than me, if only slightly). But since it marks a kind of ‘halfway point’ (if I’m lucky) in my life, it’s as good a time as any, I feel, to reflect on the question: What does it mean to age as a disabled woman in the 21st century?
I’m not too fazed about the ‘woman’ part. Thanks to style icons like Judi Dench and Helen Mirren, older women have a great public profile. Even those of us who are a long way from imitating these glamorous women can at least gaze enviously at our copies of the Woman’s Weekly, and know that with role models of graceful ageing like these, there is hope for us yet.
But what of us less famous mortals, who also happen to have a disability?
I’ve always said I was born in a lucky decade. In the first half of the 1950’s, survival rates for those of us with Spina Bifida weren’t great. Then, thanks to the invention of the shunt (a device used to relieve the water on the brain, a common side effect of Spina Bifida), better surgical and medical intervention and no doubt better maternal care, those rates began to climb. I was able to benefit from a lot of these improvements when I was born in 1965.
However somewhere in the 1970’s, a British doctor named John Lorber decided that physicians should offer only palliative care to babies with my condition, and let the chips fall where they may. Unfortunately, many doctors worldwide adopted this practice, and the survival rate dropped once again. Fortunately, better medical care and more enlightened attitudes have seen it climb since then.
Three other friends of mine, all 60’s babies who also have Spina Bifida, celebrated their 50th birthdays last year. A quick look at some of the Facebook pages for people with Spina Bifida will reveal a few of us who are now in their 7th, or even occasionally 8th decade of life. Going by some of their own accounts at least, they are not only surviving, but thriving.
It’s true that the extended lifespan for those with this condition is something that the medical profession has not entirely caught up with. In 2003, the ‘Evidence-Based Practice in Spina Bifida Conference’ was held in the US. One expert MD, Timothy Briel, noted: “We’ve grown beyond the boundaries of established medical research. We are the pioneers. Many adults with Spina Bifida know more about their bodies than the physicians they see.”
Even so, with the increasing use of the internet by laypeople for medical research, this ‘lag’ in knowledge is not necessarily a bad thing. If we remain aware of our bodies and any untoward symptoms that may arise, then communicate these to our health professionals and make sure they are acted upon quickly, health problems can be kept to a minimum.
So, as another birthday rolls past, I’m not finding any real reason to dread getting older as a healthy woman who happens to have Spina Bifida. In fact, I’m looking forward to getting to 50 – and beyond.
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