DiversifYA: Angeline Adams
|October 23, 2014||Posted by DiversifYA under Disability and Illness, DiversifYA|
Today’s post resonates with me on many levels, so I’m very excited to share it with you all! Angeline Adams lives in Belfast, Northern Ireland, where she writes both solo and in collaboration with her partner, Remco van Straten. As well as freelance journalism for magazines and websites like Fortean Times and The Toast, she have various children’s and YA fiction projects on the go, inspired by her interests in folklore, mythology and history. Follow her on Twitter.
1. How do you identify yourself?
I’m disabled, and have no problem with calling it that. Since I was 9 I’ve had severe Crohn’s disease. It has an enormous influence on my day-to-day life in various ways: apart from the ‘usual’ symptoms, it also makes it more difficult to deal with depression and anxiety, with keeping the ‘black dog’ away.
2. What did it feel like growing up with Crohn’s?
It was isolating – I missed a lot of school, then had to have home tuition because I was too sick to go to school at all. I don’t think I really understood just how much of normal teenage life I’d missed, and what it could have been like, until I watched younger friends and relatives grow up. Crohn’s gave me very different priorities from most kids my age, which is sad in retrospect: no seventeen-year-old should have to hear news like, “We’ll have to do our best to conserve what’s left of your bowel over the next twenty years,” especially when they’re geared up (unrealistically, as things turned out) for one operation to pretty much solve everything.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
Balancing the fatigue Crohn’s causes with my activity levels is an ongoing, evolving project. My life and how much I expect to get out of it has changed over time: I’ve met my partner, started freelancing as a journalist, moved out of my mum’s house, and we’ve got a place of our own. My body has changed due to the numerous operations in which parts of my small intestine were removed. After each surgery, after each change in my life really, I have to deal with whatever the new status quo is. And my body has changed over time, due to having numerous operations in which severely damaged parts of my small intestine were removed. So every time change happens, I have to deal with whatever is the new status quo. It’s still frustrating wanting to do more, explore life more; but not being able to, due to the limits that the Crohn’s imposes. There’s still much medical uncertainty about the future, though the availability of medication like Humira has made a huge difference to my perspective: after a decade in which I had major surgery roughly once every two years, I haven’t needed surgery for five years now, which I see as a victory.
I don’t think there are any real perks; disability isn’t automatically off-set with superpowers like in the comics. However, I don’t think I would have met my partner, who is from the Netherlands, had my life not taken the turns it did due to Crohn’s, in that in the early 2000s I was not really getting out much and therefore found my social outlets online. I think I made up a lot of lost social ground that way, and there are some amazing people in my life, many of them chronically ill themselves, who would not be there had we not had that in common.
As a writer, I think the Crohn’s has absolutely informed my perspective. It, and other experiences in my life, have made me intensely conscious of mortality and vulnerability, and that comes through even when I’m not writing overtly about illness or disability.
4. What do you wish people knew about having Crohn’s?
That it varies from person to person, and that any individual with Crohn’s is going to have ups and downs which don’t necessarily correspond to how well we look. Also, people have a tendency to go, “Have you tried…?” and then often suggest either very basic things most people in my position are already doing (yes, after spending two thirds of my life with Crohn’s, I have thought of seeing a specialist!) or whatever quackery they’ve seen advertised. “If it doesn’t cure, it won’t hurt” does not apply, as there are many things that can make me ill, and most novelty diets people have proposed would sooner kill than cure me.
I think it’s mostly that people just want to help, and I do understand that by suggesting things people feel less powerless. However, the undercurrent of, “If you would just do such-and-such, your health would improve,” is a misunderstanding of what life managing a chronic illness is actually like. The length of bowel that I have lost will not magically grow back, so the key idea is ‘managing’ as opposed to ‘completely fixing’. And “managing” for me means that one day I work in bed (or don’t work at all, or work on whatever basic things I can handle when I’ve been up all night with the Crohn’s) and do a quarter of what I’d hoped to. On my best day, my normal isn’t going to be a healthy person’s normal, and I’m at peace with that because I’m not comparing my day to others – I’m comparing it to my worst days.
5. What are the biggest cliches/stereotypes you’ve seen?
Crohn’s doesn’t appear in fiction much, but there was some dismal news reportage on it recently, falsely claiming that it’s caused by eating junk food. That’s a cliche associated with many conditions in which food or digestion is somehow involved. I think this real-life example illustrates a problem often seen in fictional portrayals of chronic illness and disability: there’s a history of having it represent some personal or moral failing of the character. So the character is selfish or lazy or resentful, and their illness/disability is either a punishing manifestation of some sort of “natural justice”, or the physical outcome of some emotion of theirs (anger, resentment, grudges) that has turned on them. At best, this is then followed by self-sacrifice and redemption. That is not a truthful or helpful way to portray medical conditions!
I read a very wise post about this by Stephanie Burgis recently (http://www.stephanieburgis.com/blog/talking-about-chronic-illness-as-a-reader-and-as-a-writer.php), in which she unpicked the problem at large, a specific example that hurt her as a reader with a chronic illness, and her own experience of having inadvertently contributed to it in her own work. I personally have one character in an unfinished novel who I am having to handle very carefully for this reason.
This morality/disability link is supported by the current UK government, which has reawakened the spectre of benefits claimants as ‘scroungers’ and ‘malingerers’. They try to prove this by forcing people into work who are not ready for this, and in many cases never will be; then make hay with the disabled employment figures while conveniently forgetting the uncertainty, stress and hurt caused by their faulty work capability assessments. It’s hard not to get angry about this, and it brings to mind that old maxim of judging a society on how it treats its most vulnerable members.
BONUS: What is your advice for writers writing diverse characters?
I think it’s important not to get overwhelmed. Often we’re particularly concerned because we’ve encountered fictional worlds in which we felt unrepresented or badly represented, and the fear of getting it wrong and causing hurt can be enormous. But if we can see it as just one among many writing problems that we’re learning to solve as we write, we can hopefully feel more in control.
Admittedly, this is more advice about a state of mind to cultivate than a practical tip, but I think often the biggest problem for writers is overcoming fear of failure in a variety of guises. As with other things we worry about, we may have to accept that we will make mistakes as we learn, but it’s better to have a draft with problems (which, as ever, we can improve with research, and help from critique partners, particularly those with specific knowledge and experience) than no draft at all. Then at least you have something to work on. And yes, I struggle with all of this myself, which is how I know!
I’d like to see more writers getting away from cliched stock disabled characters: the kid with a learning disability who has psychic powers, the guy with Aspergers who displays great feats of memory and is a crack detective, the character in the wheelchair who solves crimes using the internet, from their back room – which they never seem to leave, because writers think of wheelchairs in terms of confinement rather than freedom. And of course, people forget that you don’t have to have something visible like a wheelchair or white cane to have mobility problems or a visual impairment – and many disabilities are hidden.
In general, I would urge writers who want to be inclusive about disability not to present a disabled character as just a token. Let the disability be part of their identity, but not all there is to them. And I think that when a disabled character doesn’t quite work, it’s often because they’re written in terms of the impact they, and their disability, have on others. But what should matter instead is: how does their disability, and everything else that goes on, impact on the character’s own life?