“Inspiration” and Agency in the Arts

A couple of weeks ago, a response video was posted by Amanda Mills to my appearance I did on the No Totally podcast. It’s a fine video laden with first rate points that serves to correct many of my points. I don’t agree with every point on it, of course, but I respectfully disagree to the highest magnitude and strongly urge everybody to follow her site and twitter feed.  She’s a vital voice and one I admire.

One of the areas of disagreement we had was the movie Rain Man and after some intense thought, I’m forced to agree with her. It isn’t all that accurate as a portrait of low functioning autism. (1) It’s definitely a Hollywood take. Yet, it did speak to me since it provided flashes of recognition. And yeah, I’m giving it a bit of a pass because it’s also still a great film. Problematic or not, the acting and directing are stellar and it remains highly entertaining.

Yet, it’s a film entirely told through the NT point of view. The movie is entirely about how autism impacts a neurotypical person and how the neurotypical person helps the autistic individual. It’s a film that reduces the neurodiverse to props. In 1987, when it was made, even addressing the issue was bold, but surely now, 28 years later, we’ve moved past that.

Nope. as I’ve thought on the subject this week, I’m coming to a frustrated conclusion: I think things are as rough as they’ve always been. If there are glimmers of hope, they come from our fervent refusal to shut up. We’re steadily making a dent in the memoirs about dealing with autism market previously dominated by family members telling our stories. But in the mass media? The ND are still depicted through another perspective.

This isn’t unique to us. Disabilities of all stripes seem to come through a perspective of another person. With the exception of biographies of people like Ray Charles, media depictions of disability tend to filter it through a family member or a romantic partner. It’s their challenge. How does someone cope with loving someone whose life is different? This even extends to stories of great lives like Stephen Hawking! (2)

This is especially common in the fatal illness genre where the focus is on how a cold cynic, usually male, learns about life through a noble dying person. Film romanticizes dying without the darkness of viewing life through the eyes of the dying. The terminal die nobly to teach us how great we can be. They are props.

I understand why the arts do this. Actually dealing with the reality of these situations means confronting a deep vein of pain and sadness. I’ve talked to friends with severe disabilities. They openly admit that yes, it can be hard. I make no secret of that fact here. Autism is a rough road. The disabled know the world is hard. Frustration surrounds us.

If we’re given agency in our own art, the cute inspiring story goes away and that’s not ok for the media. I’m currently working on my memoir and it’s not a story of the people who helped me. Oh, don’t get me wrong, I will give credit where due, but he focus is on my perspective and that’s one of screaming against a world that hasn’t listened often enough. It’s how we really feel.

We aren’t living our lives in any inspirational way so much as we’re doing what we have to do because we want to matter. That’s not inspirational, it’s a survival instinct. It’s an idea that crosses all boundaries. Everybody wants to live a fulfilling life. It’s not inspiring to see it in those with challenges.

This brings me to what I want to see in the media: a better job of handling all issues. Write disabled characters from their points of views. Give us well rounded characters fighting the good fight. Enough of the cuteness! Give us agency in our own stories.

We’re out out to live our lives for others. (3) We’re just out to be happy. We’d like to see it in the media.

(1) Discussion of functioning labels is for another time. I’m less certain on them.

(2) I haven’t seen The Theory of Everything. I’m not judging it preemptively. But my podcast partner has. It doesn’t appeal to me.

(3) I do live my life for another, by choice. That’s how marriage works.

3 thoughts on ““Inspiration” and Agency in the Arts

  1. Pingback: The Problem with the Parent Narative | A Flickering Life

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s