On a fairly regular basis, I have people send me disability related items that they think may interest me. Occasionally someone will tell me to read a book because they are interested in my take on things. I’m usually game. I like to expand my horizons, and I know that about 90% of this stuff is stuff I wouldn’t see if someone didn’t take the time to point it out to me.
A friend sent me a book to read (I will keep this book anonymous because I don’t want to upset the author, and I’m pretty sure she didn’t do this out of malice), and while it’s not my usual read, the way it was sent to me intrigued me. “Hey Sarah, I know this isn’t your usual, but disability is mentioned in this book and I’d be really interested to see what you think about it.” I replied, asking for more details and I got basically a wink and a mysterious smile in response and, “You’ll see…” Well, I’m a sucker for “you’ll see…” so I found the book on my library’s audiobook site, downloaded it and I’ve been giving it a listen.
My friend is right, this absolutely isn’t my bag, but I made my way through it, and yes, disability is mentioned. The protagonist has a heart condition (which gets cured, and that’s fine, but the “cure narrative” is something that I’ll leave for another day), but it’s really a passing comment about a minor character that doesn’t even rank in the book (and basically is just mentioned for this one instance) that raised my hackles, and it’s the reason for this post today.
The comment that got me was a bit of a backstory about an assassin who was injured, and now he is disabled, bitter, and angry, and waiting to die.
There seems to be a common belief that I run across in books and media quite frequently that individuals who are disabled, or become disabled suddenly (or slowly), can’t be anything but depressed and miserable with their condition. Suddenly that character isn’t really human. They aren’t comfortable in their own skin. They are a prop, some backup device to add interest and make a point, rather than being explored and fully crafted like everyone else. A line is drawn – there is the character with a disability, and then there is everyone else, and that character with a disability is just longing for the days he or she can be/was just like everyone else. And yes, some people with disabilities do feel that way, but I will balance that admission with the fact that some able individuals feel that way, too.
There is a huge, glaring problem with the portrayal of disabilities in this manner, and a prevalent idea in our society that those of us who live life with disabilities, spend it just pining away for the day that we can be cured and “normal”, or be put out of our misery (for more of the assisted suicide/death and disability aspect of this, read this post).
Disabilities are inconvenient, and they are limiting forces that people don’t understand, and therefore, there is no possible way any of us could ever really be happy. That leaks into our media, it bleeds into our movies, TV shows, and books and it’s absolutely disgraceful. It paints us as the other, we aren’t fully people, so we are often shown as watching life happen around us while we are incapable of actually living ourselves. It’s an isolating force, driving a wedge between people because how on earth are you, the able individual, supposed to be able to relate to me, the miserable individual with disabilities?
We are confronted with celebrated movies, like Me Before You, where the man with disabilities (who, if I’m correct, isn’t even played by an actual disabled individual, and the author has been harped on quite a bit for poor research about the actual condition) basically decides that he can’t handle putting anyone he loves through life of being with someone in his condition, so he shuts himself off and sort of fades away. The message: I’m disabled, so I can’t really live life and I can’t bear inflicting myself on those I love. If I can’t live fully, then they should be able to *cue romantization of this horrible theme*. (This is a gross paraphrase because I absolutely, 100% refuse to read the book or watch the movie or have anything to do with either of them, including reading the synopsis. I can’t stomach it, so that’s a poor summary based on what I’ve heard.)
Yeah, some people do feel like that, but there are a lot of us out here who don’t, and a lot of us where sentiments like that portrayed in our movies and books are downright offensive. For a better overview of this movie and why it is so offensive to many of us in the disabled community, I highly, highly suggest you read this post on Crippled Scholar.
Disabilities are hard for people to handle, and even harder for people who aren’t disabled to deal with in the books they write. Often characters with disabilities get relegated to a corner, mentioned but not really dealt with. Look but don’t touch – that sort of thing. Disabilities are uncomfortable, and they require a lot of research on the part of the writer. The default position by many people in society is an ableist one – people with disabilities long to be “whole” and “whole” is “able-bodied” and we are miserable until we get to be “able” just like everyone else. Therefore, I find a lot of characters in books who have disabilities and are bitter and angry due to them, full of resentment, and waiting to die, the authors completely forgetting that these are actually people and not disabilities that function on a basic organic level.
I really want to beg authors to think before they write characters like this. Yes, some people do feel that way, but there is a difference between feeling a certain way about life in general because you are a human being with feelings, than feeling a way about life in general because you stopped being a human and now you are a disability longing for the glory days of your humanity. That’s the paradigm shift we are dealing with here, the idea that people with disabilities aren’t as human as everyone else. We’re damaged somehow, dented, and a bit bent and battered, and therefore we are just longing for the days we can be human again and rejoin society, live life fully, and learn to laugh again. Yes, people with disabilities can be depressed and angry (God knows I am as I helplessly watch my chronic illness destroy my body), but we are depressed and angry because we are humans and that’s how humans sometimes feel about life.
I hope that distinction makes sense to someone besides me.
Books tell stories, and they send out messages to everyone who reads them. Really, think about the message these characters are telling the disabled community: You guys just long to be able-bodied. Man your life must be miserable. How could anyone who is disabled be truly happy? Just give up. Sit down, shut up, and we’ll call you when we can cure you, or when we can gracefully delete you from the plot. On the flip side, a society full of ableism sees: Look at all these poor disabled people who just long to be “normal” just like me, be nice to them because they are fragile.
I personally don’t think that much of this is done out of malice, but rather from a place of ignorance and misunderstanding. It’s a failure to see the person in the wheelchair, and rather just focus on the wheelchair. It’s the inability to realize that there is a person who happens to be on the Autism Spectrum, rather than Autism that is person shaped. It’s deeply imbedded in our culture, and it’s so quiet and visceral that we don’t even realize it’s there until a minor character pops into a book unexpectedly and it’s mentioned that he wants to die because he’s disabled and then is never mentioned again. As a reader, I feel like I’m supposed to just shrug and say, “Yeah, that makes total sense” and move on
It doesn’t make sense, and I can’t move on. It’s an easy way out, and it plays into so many subversive, painful, discriminatory beliefs about life with disabilities. It plays into the stereotypes and underlines the common idea that, no, of course we can’t be truly happy or live life to the fullest because we are disabled, and people with disabilities don’t get that sort of thing. It allows people to think that characters with disabilities can’t be important, or primary characters in books or movies, or do amazing things or even smile and laugh because it makes perfect sense that the guy with disabilities just wants to die. We get to watch life happen, we don’t actually get to be part of it.
Under all of that is the simple fact that we deserve more than that. We don’t deserve to be pushed into corners or given token roles in books so people can say they are diverse when they really aren’t. We don’t deserve to be marginalized or shoved aside and given the burden of the depression that is being foisted upon us by an author who doesn’t understand the disability they are writing about. We don’t deserve to be treated as the “other” in media, and we don’t deserve to carry the weight of society’s ableist assumptions.
We are people, damn it, and we feel a broad spectrum of things because we are people. We deserve to be treated as such in your books, your movies, your media, and your culture. We can do amazing things, and we deserve the opportunity to do those amazing things, and to fully be explored on a human level, regardless of how uncomfortable it is for authors to do the research. We deserve to be represented accurately, and fairly. Period.
There is so very much more I want to say, but this is long and rambly enough.
I will end this post on a happy note. Speculative fiction has been changing. The portrayal of disabilities in books has been improving. I’m finding more of it in the books I read, and it’s been done better and better. More and more authors and fans are finding the courage to stand up and demand their rights, whether its accessibility in conventions, or proper portrayal in books. We have a long, long way to go, but we are going in the right direction, and I applaud all of the authors out there who take the time and make the effort to do what it takes to portray their characters with disabilities accurately, and fairly.