How I Feel About “Better Dead Than Disabled”

I don’t usually talk about what I’m planning to write until after it’s written. My process involves more internal processing, figuring out my thoughts while writing them, before I’m prepared to have discussion later if anyone wants to talk about it. But this time was an exception. I stated multiple times that I’d be writing this over the weekend, mostly so I couldn’t back out of the commitment. I have so many intense and deeply rooted emotions on this one. Now I have to dig them up; sit with them; see, hear, and feel everything they have to say; and then try to capture them in words…. It’s going to hurt. So here goes.

I’m pretty sure that I heard whispered warnings of the movie Me Before You in my disability circles long before it came out. Immediately placed on the list of things I didn’t want to think about, my selective memory filtered it out. So a few weeks ago, when someone mentioned the movie to me, I sincerely had no idea what they were talking about. But they only had to describe the exposition for a sentence or two before I cut them off, “Let me guess. Is this one of those ‘assisted suicide’ movies where the disabled character dies in the end?”

Yes, yes it is.

Let me give you some context. In all my years of movie watching, I’ve never seen a character in a wheelchair play the romantic lead. I’ve never seen a character in a wheelchair play the CEO. I’ve never seen a character in a wheelchair play the crime-solving detective. I’ve never seen a character in a wheelchair play the gifted musician/artist/athlete who goes all the way. I’ve never seen a character in a wheelchair play the doctor saving lives. I’ve never seen a character in a wheelchair play the justice-seeking lawyer. I’ve never seen a character in a wheelchair play the snotty mean girl. I’ve never seen a character in a wheelchair playing the dumb jock. I’ve never seen a character in a wheelchair play the save-these-at-risk-kids teacher. I’ve never seen a character in a wheelchair play the hard-hitting news reporter. I’ve never seen a character in a wheelchair play the mom or dad. I’ve never seen a character in a wheelchair play the brave teen who saves us all from dystopia.

Are you getting the idea? I don’t mean rarely, or sometimes, or that one time. I mean never have I ever.

Instead, you know what I’ve seen? I’ve seen the character in a wheelchair  play a tragedy-wrapped-up-in-a-person. The plucky character in a wheelchair who suffers nobly and inspires everyone around them, all while yearning for a life on their feet. The character typically dies in the end. And these days, the character “bravely” decides to die on their own terms.

That’s it. That’s how Hollywood sees me, and broadcasts me to the world. According to the movies, my friends and I don’t even exist, and/or we’re better off dead.

Do I really have to go on? Isn’t it self explanatory how messed up this is?

If you think these are just movies, no big deal, not real life… Well, friend, I’m going to be one of those people and tell you to check your privilege. These movies promote a “better dead than disabled” mindset that absolutely impacts my real life.

I can’t tell you how many times people have said to my face, “I’d rather just die than live your life.”

What?! How is that ok?? There’s never a reason to say that to anyone! I’ve watched a lot of people face a lot of tough life circumstances, and while I don’t generally envy them, I’ve never had any inclination to tell someone their life is worse than death. Never have I ever. What’s the right response to that anyway?? I’m pretty sure I’m not supposed to agree, “Yeah, you’re right, I probably should just off myself.” Or maybe I am? Am I supposed to argue and persuade them that my life is worth living? That’s a really crazy position to put a person in. Why should I defend my quality of life to random people on demand? Typically I just settle for looking at them with a baffled look on my face. It’s the most sincere response I can muster, and it puts the burden back on them to explain themself.

It isn’t just socially inept individuals who make me defend my life’s value either. It’s society at large. Let me tell you about the cognitive dissonance it takes to be a liberal Portlander in a wheelchair.

To be a card-carrying liberal Portlander, it’s basically required that you can deliver a lecture on environmentalism, income inequality, or LGBT issues at the drop of a hat. That’s cool. It’s also highly recommended that you can at least throw around a few terms to show your awareness of racism, feminism, and immigration issues. Also cool. But when it comes to disability issues, my people suddenly turn on me. I challenge you to find an able-bodied liberal that can even name some actual, relevant disability issues.

The only pseudo- disability issue that I ever hear in conversation is assisted suicide. I can’t tell you how much I dread those discussions. I can be in a circle of friends, colleagues, people who I generally like, respect, and agree with on most things…. And then they’ll start talking about the latest “right to die” story. Suddenly I’m listening to descriptions of a life very much like my own–a life where a person needs help with most personal care and hygiene tasks–and everyone agrees that it’s so undignified. They swear that if they ever end up in the situation, they’ll choose death over becoming a burden to their loved ones.

So apparently that’s how they all see me. An undignified burden. An undignified burden without enough going for me to justify living. Thanks for your honesty.

(Don’t tell me that assisted suicide laws only apply to people who are going to die soon anyway. That may be the intent on paper, but not the reality of how it’s carried out.)

People think they’re being so open-minded and compassionate. But here’s the thing–is there any other group of people where you advocate for their suicide? I try to be careful about making comparisons, but sometimes it feels appropriate: The LGBT kids get an “it gets better” campaign, and we get euthanasia. They get suicide prevention hotlines, and we get a needle.

Do you understand how terrifying it is to be in the group that society agrees is better off dead? If you, my able-bodied friend, are ever feeling suicidal, you can bet your friends and family will do their best to support you and make sure you get the help you need to manage your depression. They’ll encourage you to get counseling, medication, whatever it takes, and assure you that eventually you’ll feel better about the world, that your life matters and is worth fighting for. But me? I can’t count on that. There’s a perfectly good chance that if I’m ever back at a place in my life where I’m thinking about suicide, people will just go along with it. They’ll hook me up with the resources and help me do it. Later, one of them might get a book deal, or a movie, or at least a TED Talk, where they’ll tell “my” story, except that it won’t really be my story.

Is this dark enough for you yet? Trust me, I’m enjoying this much less than you are. But this is the dark story that you keep applauding in Hollywood, America. All I’m doing is removing the faux glitz and romance.

Here’s a novel idea. What if we treated depressed and suicidal disabled people like we treat any other depressed and suicidal person? What if we encouraged counseling, medication when necessary, and warm, supportive communities? Life with a disability is hard. But generally it’s only hard because of a lack of resources and/or support. When I’m feeling depressed, it isn’t because I’m in a wheelchair; it’s because I feel pretty alone in the world. And I’m terrified that as I get older and more disabled, I’ll be more alone. Why don’t we take the approach that we take with other marginalized groups, and tackle the issues that make life with disability so hard? Why isn’t suicide prevention our primary concern?

How about now? Too dark? Too honest?

I’m going against my better instincts and sharing on such a personal level, because I believe “human face” is the best way to get people to actually listen and care. And Hollywood isn’t giving you faces that say “disabled people are a valuable part of our society,” so I guess I’m offering my own face. It’s all I can give.

….I started to write something about how upsetting it is to watch us “losing our humanity” in this way. But you know what? That implies it’s a new problem. This isn’t new. Disabled life has been devalued throughout history. Cast aside, locked away, killed off. We don’t even vocally criticize Hitler for killing the disabled. It’s not a pretty history or a pretty current reality.

But I’m going to hold onto this idea that humanity can and should be better than this. That we’re capable of judging a human life as valuable–priceless–regardless of their physical ability. We all need to be taken care of in different ways and at different times in our lives. Shouldn’t taking care of each other be a central, driving purpose in our lives? Not a burden that we view with disgust and shame?

I’m never going to be able to provide the same level of physical care for another person as what I receive. But so what? I give in all kinds of ways, and what I give matters. My disability often puts me in a unique position to give and provide care in a way that others can’t.

There’s no lack of dignity in that.

My dignity is only robbed from me when the able-bodied make me into a vessel for their fears and insecurities. An object of misplaced pity. A tragedy-wrapped-up-in-a-person.

Do better, Hollywood. Do better, everyone.

3 thoughts on “How I Feel About “Better Dead Than Disabled””

  1. Thank you, Kristine..for sharing your life with me and others. I was blessed with a grandaughter who taught our family how to enjoy ours lives with a girl with a disability. Because we never treated her any differently than anyone else in our family, she is now the strong person she has become. I will always remember her telling other kids when they asked about her arms..she replied, ” cause God made me this way” and she would continue tying her shoes or eating her food with a fork or cutting her meat.. We learned never to offer her help unless she asked for it. God blessed her with all the skills that everyone else has..she is exceptional bright and has excelled in school and now in college. Each day brings a new challenge for her and nothing stops her from being successful.
    She is our precious girl . Thank you again for being a special person, cause God made you that way.

  2. Very thought-provoking post! It seems like there are a lot of movements/schools of thought out there that promote the “Better Dead than Disabled” mentality (“Right to Die with Dignity”, the abortion industry, and the anti-vax movement come to mind). It’s important to remember that people are more than what they have been given in this life. Thank you for writing about this important subject.

  3. You hit the ball out of the park. I am a congenital quadruple amputee and a lawyer. I have even tried cases to verdict and argued appeals. Yet I have never seen anyone like me on television, the movies etc. You are so right, we are either portrayed as saints or incompetents. We just want to be human.

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