Thursday, October 24, 2013

The Disabled Protagonist

by Allison Pang


Yes, I'm finally back - but first big shout out and thank you to Jane Kindred for stepping up to the plate the last four weeks to fill my spot!

That being said, it's sort of an ironic first post to come back to - given my history of health issues, I came pretty close to going out on disability myself this summer. (Between the back and the Interstitial Cystitis - yeah, I've got plenty of painful reasons on my side.)

Which brings me to my first point - what exactly makes someone disabled? I actually did some poking around on this because of the above reasons. If you look at the American with Disabilities Act, it says:

The Americans with Disabilities Act ( ADA) has a three-part definition of disability. Under ADA, an individual with a disability is a person who: (1) has a physical or mental impairment that substantially limits one or more major life activities; OR (2) has a record of such an impairment; OR (3) is regarded as having such an impairment.

A physical impairment is defined by ADA as "any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine."

So there's a lot of ground to cover there. Major life activities are going to be things like walking, driving, self-care and that sort of thing - but it's still a pretty wide range that's open to some interpretation.

The thing is, it's easy to see someone in a wheelchair and understand that they may have a disability - but there are plenty of other disabilities that aren't nearly as well understood or as obvious. (But can be just as terrible in their own way - especially because if people don't see what you're suffering from, they often don't believe you are in pain. Even doctors fall into this category - "Oh, just push through the pain and you'll do fine.")

There was some question earlier this week (in Jeffe's post comments) about whether or not Abby from my Brush of Darkness books was considered to be a disabled protagonist. I actually took an informal email poll from some readers to get a feel for what they thought - and all agreed she had a medical condition...but not everyone saw her as disabled.  (Note for those who haven't read the books - Abby was in a car wreck a few years before that left her with a severe brain injury. She's got a bit of a scar and a metal plate in her head, a slightly messed up leg and is prone to seizures.)

Technically, by the ADA standards? Potentially - yes, she's disabled. She can't drive, for example, and her seizures tend to be of the grand mal variety. (To the point of wetting herself, in at least one instance.) But to actually be legally considered for disability there are a number of hoops to jump through - how many seizures she might have in a given timeframe. The medications she was/wasn't on. Doctor input, and so forth. For the story purpose, I didn't feel a need to take it that far - though she does no driving in the second book when she ends up going on a road trip, and she worries about babysitting her nephew, because she's trying to be more responsible about her condition by that point.

In either case, she doesn't allow this condition to stop her from going about her business. (And keep in mind, the first book takes place about a year after the accident. She's figured out what she needs to do to manage the everyday, by that point, though she has a number of emotional scars to sort through.) I've had several people write me over the years asking if I'm epileptic or if I have a family member who is. I'm not and I don't but I did some research and checked things over with a family member who is a doctor, and then used my own experience with chronic illness to flesh things out. (Abby's jadedness toward her condition is probably all me - the amount of doctors and meds I went through for the first several years as I tried to figure out wtf was wrong with me was beyond frustrating. Twenty years later, I'm still dealing with it.)

For myself, having Interstitial Cystitis means there are things I can't eat or drink. It means severe, debilitating pain when I'm having a flare - bladder spasms are awful. It means feeling like I have to pee all the time, even right after I've finished, even if there's nothing left in my bladder -  but I can sit on the toilet for hours at a time and just let it trickle out every few seconds. TMI? Yeah - but just by looking at me, you wouldn't know I suffer from it, right? But it's super shitty, all the same. Is it a disability? For some people, absolutely - as bad as my description may sound, there are people who have IC who are far worse off than I am. I have periods of remission now - but it's one of the reasons I have to be so careful with things like vitamins or other meds. Anything that might cause "increased urination," even if it's in a super low .001%  of patients? Instant guarantee to set me off on a multi-day flare that can keep me from going to work.

(But you take the IC and add  the back pain  and...yeah. Up until my fusion a few weeks ago, it's been nothing but constant, mind-numbing pain that never stopped, even as hopped up on narcotics as I was this year. And the Fibromyalgia diagnosis. It's all hand-in-hand and it never ends. It fluctuates and I've learned to appreciate the good days, but it will never truly go away and it will never be cured. I've just got my fingers crossed that this latest surgery will put me back into something resembling "normal.")

Because I was dealing with a lot of this when I wrote Brush of Darkness, I wanted to give Abby a condition that couldn't be brushed away with magic. I debated giving her my own condition, but frankly I was and am tired of dealing with it. I didn't want to write about it, so I went with something else.

Now, she does get healed of various injuries throughout the series, but her seizures don't go away. Her leg isn't fixed with a wave of a wand. Much like real life, miracle cures are hard to come by, and treating a condition is NOT the same as curing it. You learn to deal with it, or you don't, but each person's level of pain and capability is going to be different.

I should also point out that Talivar, Abby's live-in elf bodyguard, could potentially also be considered disabled, as he's missing an eye and has a severely crippled leg. He's not technically a protagonist, but he's still a major character in the second and third books.

So I've been wracking my brain for popular media where there are disabled protagonists - but there's definitely a dearth of them, particularly when it comes to women. In fact, the only three I came up with off the top of my head would be Children of a Lesser God, Soul Surfer and The Miracle Worker...and two of those are based on actual people, so I'm not sure they count from a fiction perspective. (Seems to happen a lot in Hollywood - e.g. The Elephant Man, or Mask, or Radio, or My Left Foot. It's like they think audiences can't buy that a disabled person can be a protagonist unless it's a "true story.")

If you look at comics, there's Barbara Gordon, of course. As Batgirl, she was shot in the spine by the Joker and ended up in a wheelchair - and eventually became Oracle. That's actually a pretty amazing thing, if you think about it - a female, disabled superhero? In particular, superhero comics aren't exactly known for being overly progressive. (Yes, I'm aware it was ret-conned with the New 52. But still. Her disability isn't offset by a special power, a la Dr. X or Daredevil, so I find it really refreshing.)

Other disabled protagonists might include the movie/book Silver Bullet/Cycle of the Werewolf (Stephen King) - where the main character is a paraplegic boy in a wheelchair trying to survive/defeat the werewolf attacking his town. Or, if you're stretching it - Jake Sully in Avatar - though that does have the "magic" cure/happy ending where he becomes able-bodied, so not sure about that one. How about Erik from Phantom of the Opera? (He's a villain in the original story, but he's definitely become more of a sympathetic character over the years.)

From a children's perspective, I'll throw out Hiccup from How to Train Your Dragon. It doesn't bear much resemblance to the books, but Hiccup does lose part of his leg at the end of the first movie and is seen with a prosthetic. (Much like his dragon, Toothless.)  Also, Quest for Camelot - where one of the main characters, Garrett, is blind. Or Toph, from Avatar: The Last Airbender. Sure, she's an Earthbender, but she's also blind - if she's not touching the ground with bare feet? Nada. (She's not technically a protagonist either, but I'd argue she's a fairly important main character.)

Actually - with kids in mind - I want to bring attention to Eggplant Productions which currently has a call for submissions for fairy tales featuring characters who are PoC,/disabled/ LGBT - so check it out if that's something you'd like to contribute to.

Anyway, I'm rambling now - if you're interested in seeing more about how disabilities and their tropes have been used in media over the years, check out TV Tropes here - there's a lot of good (and bad) examples.


  1. Great welcome-back post, Allison! As someone who also deals with chronic pain and many other medical issues that are not visible to the naked eye, I can really relate to your post. "Disability" is such a tricky concept, even for the ADA it seems!

  2. My mom has IC and I live in fear of developing it. I have chronic UTIs, but antibiotics take care of it.