The Bad Advocate

A confession: I liked the book Me Before You. And according to some, anyone who liked that book can hardly call themselves a disability advocate. So I guess that makes me a bad advocate.

Let me pause for a spoiler alert: If you haven’t read the book or seen the movie and you don’t want spoilers, stop reading right now! Because I will probably let some plot points slip….

Also, let me state right up front that when I talk about Me Before You, I’m referring to the book, not the movie. I haven’t seen the movie. I don’t know if/when I will see the movie because I very rarely get to see movies. Babysitters are expensive, after all….

So here’s the story behind this post: The movie for Me Before You is coming out soon. (June 3rd, if I’m not mistaken.) The movie is based on a very popular book by the same name. I have no idea how the movie treats the book–does the screenplay stay true to the book? I have no idea. But I do know that I’ve read the book, and I know the content in the book.

The movie being released has raised the hackles of some people in the disability community. In some cases, it’s potentially misunderstanding: They think that the main female character helps the main (disabled) male character to end his life. If the movie stays true to the book, that is not the case; rather, the female lead tries to persuade the male lead not to end his life, but she ultimately steps back and respects his choice to make his own life decision. She does not, however, help him do it or even endorse it.

And in some cases there are real concerns. For example, people are angry that a non-disabled actor was cast in the lead role, feeling that a quadriplegic should’ve been cast in the role instead. I can agree with that–it would’ve been far better to have a quadriplegic person play that role. There’s no good reason not to–with all of the quadriplegic men living in the world, I find it hard to believe that there wasn’t one suitable to take the role. (Side note: One thing I loved about the series Breaking Bad was that they used an actor with cerebral palsy to play the role of a young man with cerebral palsy, instead of casting a non-disabled actor in the role!)

Also, there was reportedly no one with a disability involved in making the movie. I get it: That kind of stinks. If you’re going to make a movie about disability, why not involve people who are truly living it so they can provide guidance on how to handle issues that directly impact the disability community? Valid complaint, I agree.

But another complaint I’ve heard is that the author is not disabled. True, but it’s a fiction novel. Fiction is inventing stories. Sometimes authors write what they know, but sometimes they stretch and write about things outside of their own lives. JK Rowling isn’t a boy wizard, but no one had an issue with her writing one. She’s also not a male detective, and no one has an issue with her writing one. If this were a nonfiction book on disability, then absolutely–it should be written by someone with a disability. But fiction? Are we to tell fiction authors that they can only write what they live? That seems quite limiting and oppressive to me, and it treads toward a path on infringing on freedom of speech, which concerns me a bit.

With that said, a person with a disability pointed out to me that authors who write outside what they live/know should certainly be open to criticism on their work, so they know if they’ve completely missed the mark. On that point we definitely agree–I’m not saying Jojo Moyes’ book shouldn’t be critiqued, only that I don’t think it’s fair to say that an author has absolutely no right to write a book about something she hasn’t lived when we’re talking about fiction. 

On the discussions of the movie among some disability advocates, it has gotten downright nasty (as things tend to do on social media…sigh…). On one thread, I saw a woman express some of the very things I had thought about the content of the book, and she was absolutely shredded by people accusing her of “ablesplaining” (which I take to mean when an abled person tries to speak about a topic related to disability) and getting downright nasty about it. It was as if her opinion wasn’t in the least valid, which I found incredibly frustrating. It’s not that I cared that no one agreed with her–it’s that if we’re going to discuss hard topics, I think the discussions should be open and respectful. This isn’t the first time where I’ve seen a discussion about disability take on a bullying turn, where anyone who has a different viewpoint on an issue than the loud, dominant majority is pretty much ripped apart, chewed up, and spit out. What happened to free discourse? What happened to respecting others’ views?

I will say that when it comes to a topic of disability like this one–quadriplegia–I am the first to agree that someone living as a quadriplegic should have the loudest voice here. Yes, I absolutely want to hear what you have to say on the topic, because you’re living a reality that I am not, and I am 100 percent certain that you know it, live it, and feel it more than I do. But does that mean no one without a disability has a voice? No right to talk about the topic? Because that’s what’s been said on some of these particularly ugly threads.

And that brings us to a scary point, in my mind: If we’re only allowed to talk about what we know and live, how are we to connect with people who are living differently from us? This ability/disability discussion has been likened in some of the threads I’ve seen to racism: A white person can’t speak about the black experience, for example. And in a sense, I agree. As a white woman, I have no idea what it’s like to live as a black woman (or man, for that matter). But I’d like to know. I’d like to hear. And I’d like my thoughts to be heard, too. I’d like a back and forth discussion on the matters. Same with disability. I know what it’s like to live as a mother of a child with a disability, but I don’t know what it’s like to live with disability myself. That doesn’t, however, mean that I don’t have a perspective to share. It means I certainly shouldn’t push my view on someone who is living that reality, but why can’t we even talk about it?

It scares me to think of a world where we’re limiting what people can speak about. Honestly, in some of these disability advocacy discussions, I am afraid to speak. I keep silent because I don’t want to be the one ripped apart. It’s a stress I don’t need. But I keep thinking that refusing to allow people to share ideas creates a division, an “other”–and isn’t that what we’re fighting against? We fight for inclusion, we fight for people with disabilities to have the same rights as everyone else–so isn’t creating a divide counterproductive?

I’ve heard some disability advocates accuse the Down syndrome community of separating themselves from the larger disability community. Why aren’t we chiming in on the issue of Me Before You, for example? Well, I can’t speak for the whole of the Down syndrome community, but I can say that for myself, I have kept out of some of the larger disability discussions because of how cutthroat they can be. If you’re not fighting the exact same fight we are, then you’re not a good advocate.

Well, I’m not always going to be fighting the same fight. I happened to find the book Me Before You to be a thoughtful portrayal of some very tough issues. Was it perfect? No. But I liked that it touched on some issues that relate to disability that are often swept under the rug. So am I going to boycott the movie? No. Am I going to tell people not to read the book? No. Not only did I think the book was reasonably good, I also think it opens up a discussion about disability.

Now if we could just talk about it with mutual respect, with people listening to other viewpoints, and without it turning into an us-versus-them issue….

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