Pluck: Public Perception and Co-existing with Chronic Illness
Editor's Pick: We originally learned about Lene Andersen and her noteworthy blog, The Seated View, from a blogger named Laurie Kingston (Not Just About Cancer). Lene's post on "Pluck" discusses the public's appetite for triumphant, uplifting health stories that require the protagonist to "overcome" a disease. What happens, Lene pointedly asks, if your condition or disease is chronic and there is no such thing as defeating it or conquering it, at least in the traditional sense? While Lene's personal health experience involves rheumatoid arthritis, the value of her voice and insights spans far beyond any particular illness. With that wide reach in mind, we are pleased to highlight Lene's writing in a new HealthCentral feature, the Best of the Health Blogosphere.
The other day, as I was doing preliminary research for how I was going to spend my two allotted monthly credits at Audible, I came across a new release called Strong at the Broken Places , which looks pretty interesting. I haven't fully made up my mind yet, but it's on my wish list and I suspect it'll be making its way into my library in the near future. However, today is not about that book. Today is about the description of the book (which I swear I found on Amazon.com, but now only appears on Amazon.ca. Strange). And I quote from the Book Descriptions.
"In 2003 Cohen published Blindsided, a bestselling memoir of illness. The outpouring of support revealed to him that not only does the public want to hear from people who overcome the challenges of illness, but that in the isolated world of illness, there are people who want their voices to be heard. Strong at the Broken Places was born of the desire of many to share their stories in the hope that the sick and those who love them will see that they are not alone each" (emphasis mine). And I got a little stroppy.
It's a difficult line to walk, this sharing of your life when you have a serious and/or chronic condition. Because on one hand, that snippet from Amazon is right: I think a lot of us do it to shine a light on the darkness, to create a community between people who historically have been very isolated and emotionally feel alone in this state of non-health, a state that is rarely publicized because, well, let's face it - it's sort of icky, innit? And we do it not just for each other, but for the rest of you, the able-bodied, because it creates a larger community, one in which we are integrated as just another expression of the norm, instead of being different, being The Other.
Which brings me to the reason for the stroppy: that line about the overcoming (which isn't written by the author, so I'm not dissing him). I looked it up and to overcome: to defeat, to prevail over, to surmount, to conquer. And that's the tricky bit, because traditionally, yes, the public only wants to hear from people who "overcome" the challenges of illness. They don't want to hear about the daily struggle unless it culminates in an achievement, unless you're the plucky kind, preferably pretty enough to qualify for poster child status, the one who can smile through the hardship, remind the great unwashed of how lucky they are to be healthy. And you know what? There is no overcoming of disability. Because a chronic condition doesn't improve, you cannot conquer it, you cannot defeat it. Arthritis doesn't go away. Neither does MS, ALS, spinal cord injuries, muscular dystrophy, many types of blindness and deafness. There is only living with it, coexisting - sometimes uneasily, sometimes not. Having a disability is part of what you are, what you do. Sometimes it's a small part and sometimes, it overwhelms the rest. But what remains is this: you live your life anyway. And to the aforementioned great unwashed, this apparently looks like plucky overcoming and I'm not quite sure what they expect - that people with disabilities should curl up in a fetal position and a whimper the rest of our days? Continually bemoan our wretched state? Off ourselves as living without walking is a fate worse than death (an act which many able-bodied people have told me would be their response to disability)?
Maybe it is the long history of segregation and institutionalization that renders our experience so alien and horrifying. When a segment of the population has been hidden away (which was our culture's equivalent to being exposed on a rock to die), perhaps it is no wonder that a horrified reaction still lingers. Being taken away from society, from your family, isolated and kept apart can be a fate worse than death, can't it? Loss of freedom is after all the punishment we inflict on criminals, it is the worst thing we can imagine, so it's no wonder that disability becomes lumped in with things that are worse than death. And maybe I ought to be patient, to remember that deinstitutionalization only happened in the 1970s, to remember that social change takes time and that a mere 40 years is not long enough to cleanse away the stench of being hidden. That racism still exists despite slavery being abolished 150 years ago. That sexism is still alive and well despite women being granted personhood 79 years ago. But I have to admit, I'm tired of being patient. Mostly, I just want to smack the condescending idiots who get lost in the overcoming while screeching 'snap out of it!', but alas, that's not a terribly effective way of hurrying change along and besides, it would probably hurt my arm.
And I think that's part of the reason why we blog and write: to remove the patina of Other. To document how, within our different experience, we are not different. And most of all, to take the language back from being filtered through the able-bodied perception of disability and illness and ensure that the voices that tell our stories belong to us.
Lene Andersen originally posted this on her personal blog: The Seated View.