Monday, October 5, 2015

Carrie Bailey on Struggling with Disability in Life and Fiction

Today I'm happy to present a guest post by author Carrie Bailey. She's seldom discussed her ocillopsia, and bringing up health issues in public always takes bravery. The more we've discussed it, the prouder I was to be able to give her a platform to discuss it. The essay itself is beautiful. I'll get out of her way now, and let her talk. -John

I admire people who speak openly about disability, but I’m afraid of being thrown in with the inspiration porn if I discuss mine. You would think that someone who publishes novels and has traveled around the globe for the past five years could at least tell a therapist about a condition that impacts every part of my life. He is required by law to keep my secrets.

I have to face it. I’m a coward.

I spent eight months talking dark family secrets and analyzing the symbolism in my writing before I mentioned to the man that I had a condition that affected my equilibrium. Ever since it developed in my twenties, I have insulated myself from talking about it by allowing people come up with their own explanations for what is wrong with me.

And I repeat the same tired lies about how I first started writing, because it’s much sexier than saying I didn’t want to go out in public with my cane and let people watch me drool.

Is she using heroin?
No, just enough prescription Valium to topple an elephant.

It started when I was a teenager with three day long bouts of vertigo, tinnitus and paroxymal spells, usually whenever a midterm was due in college. My professors didn’t believe stress could leave me crawling around vomiting on everything and usually refused to extend make up tests, but the doctors could only give me drugs to knock me out until it passed on its own.

One day in summer, after graduation, I woke up to the familiar sight of the room spinning, but it never stopped. It continued to appear to move couldn’t focus on objects.  My ears buzzed so loud that I couldn’t have conversations or listen to audiobooks. Months passed. Eventually my brain adapted. Although my field of vision still moves, jiggles and bounces every time I move my head. I can walk without a cane in daylight. And I was able to ditch the drugs. I am not nauseous anymore, but it is a constant strain to focus in on blurry objects whenever I am in motion. . I can’t read signs unless I’m standing still. I have trouble reading. And I can’t walk or drive in the dark. I often fall over just closing my eyes while standing.

So, this is vertigo?
No, it’s ocillopsia.

My field of vision constantly appears as if someone was taking a video recording without an image stabilizer.

At the time, I was told I would probably lose my hearing. Six years later, that started. I wear a hearing aid in my left ear, but I cannot recognize about half of spoken words even with it. The loss in my right ear is milder.

It has been so hard to have a rare disorder, which is often as hard to explain as it is to understand unless you experience it.

It wasn’t until I read a recent post on John’s blog that I realized I how much I’ve depended on fictional characters with missing limbs, broken bodies, mangled physiology and unique ways of thinking that fall outside of the clinical definition of sanity to cope with the awkward otherness I feel about all of this.

When I was healthier, I was one of those people who believed that for the most part everyone coddled and tenderly cared for the disabled and that everything they needed was generously supplied by the state. And I imagined they were happy about the arrangement. I even enjoyed inspiration porn, because it confirmed to me the powerful idea that all you had to do in life was generate enough positive thought and you could achieve anything.

Now flip cause and effect.

If you can’t do something, it’s because you’re not thinking positively enough. It’s your fault. Although it is the simplest logical fallacy to identify, people make this switch all the time.

Friends and family fled me like a sinking ship when I first got sick. I remember begging people to understand my new limitations and tried to share doctor’s brochures on my condition, but for the most part, they quickly attributed the change in my behavior to a weakness in character, malingering or pity hunting.

During the first month, just after a coworker accused me of knowing I was going to become disabled, I attended a speech with a supervisor on accessibility and education. That woman dismissed the speaker’s appeal for mainstreaming opportunities as “too angry.” And I’ve kept my mouth closed ever since.

Over the last ten years, my ability to cope with my condition has varied, but it has never gotten easier. Yoga will not grow back the hairs in my inner ear that control my balance no matter how much I meditate.

That’s avoidance, right?
Yes, whatever you want to believe.

If I don’t talk or write about my condition, it’s because it is one area of my life where I can silently tiptoe around the raging tides of misunderstanding. I can’t hide being a woman or biracial when I meet someone in person, but like the writers that have used pseudonyms to obscure their gender and race, I use silence to avoid being trivialized. Yet, it’s very different.

People sometimes claim that you can’t compare disabilities, but we can and do measure physical and mental performance. Ever heard of IQ tests or checked how many kilos you could lift? We constantly measure ability on a spectrum and quantify it with rating systems developed by comparing one person’s performance to another on the same task.

Once the conversation veers onto the subject of ability, everyone is involved.

I’m convinced that we  avoid talking about disability because it reminds us of the safe and obvious issue of our mortality. You can’t argue with death. It will happen. We fear talking dis-ability because the difference in people’s abilities is the most controversial subject of all time. Physical condition. Intelligence. Social skills. The whole of politics hinges on how we answer the questions, ‘Who deserves what, how are they going to get it and why do they deserve it?’

Thomas Hobbes famously said, “life [without social contracts to make it more fair] is solitary, poor, nasty, brutish and short.” It’s a line of thinking based on the idea that we all form a sort of truce and submit ourselves to laws, because we are all inherently equal if we can overpower another person in their weakest moment. Like when they’re sleeping. Only, like most great philosophical ramblings, that’s crap.

We start our lives depending on other people and most of the time, that’s how we end them, too. In between, our abilities vary wildly.

Yet, writers often invent characters with extra abilities. We love to fantasize about having incredible powers randomly bestowed upon a person by freak accidents or winning the genetic lottery. And we equally pour over stories about people who live exceptional or even mediocre ones as long as they ‘earned it’ by overcoming a conflict and/or giving us closure on it.

What we don’t want is to be bored by complex and mundane details that lead to zero dramatic climaxes. And since that is all I have to offer when discussing my disability, I’ve never learned to effectively explain my limitations. I don’t have one diagnosis or one condition. I have five or six. No one knows what caused it all. Except for the hearing loss, there is no treatment. Yawn.

I’m not a damsel in distress. I’m a coffee-obsessed science fiction writer who has to spend most of the day lying down. I look lazy. I avoid crowds. I stumble like a drunk at times. I don’t make eye contact. And I often appear to be ignoring people, but I’m not.

I love disabled characters when the dull truth is hidden in the fiction. Some writers slip solutions to everyday problems on how they circumvent social situations, negotiate for what they need to do what they know they can and enjoy success.

These characters have a few things in common:

1. They have a lead role in the story or significant influence over events
2. They do not become disabled or recover from their disability during the story
3. They have additional flaws not related to their condition(s)
4. The story makes no judgment about their impairments, positive or negative
5. The character defines and pursues a good life on his or her own terms

If you’ve seen Arrested Development, you might remember Liza Minnelli’s portrayal of an off balance older woman called Lucille 2. She was the nemesis of Lucille 1 and I loved watching her fall. Although I enjoy lots of characters that manage engaging lives with disability, she was the first representation of a person with a vestibular dysfunction I saw where the other characters appeared aware of her condition and offered no shallow sympathies for it. They didn’t offer pity or underestimate her. It was just part of who she was and it was funny.

In the DC Comics Universe, Count Vertigo transforms his condition, Meniere’s Disease, into a superpower by adjusting a device like a hearing aid to project his condition onto his enemies. He’s also deaf, but also deliciously evil. And that makes me happy and relating to the creator, I feel significantly less lonely. I was diagnosed with Meniere’s Disease. Although I no longer experience vertigo, I am going deaf. 

According to the World Health Organization, about 1 in 5 people have a disability by the broader definitions, but none of us are linked by a common history. Our special needs vary and many disabilities aren’t visible. When you’re a naturally private and independent person like me, it’s only too easy to let a condition quietly isolate you.

Recently, I’ve started to question why talking about my condition is such a big deal. Why do I admire people who openly talk about their special needs, like John, when I’m satisfied to make excuses that hide my limitations? Why couldn’t I just say ‘no’ to yoga? Why do I apologize for the things I can’t do? Why do I still think you have to be brave to live with special needs?

I don’t know where these questions will lead me, but I do know that I have lived my life taking pride in my abilities and being ashamed of my limitations. Shame may be the worst limitation and overcoming it a great ability, but I still have to consider what any of it has to do with a person’s actual worth.

I don’t feel less relevant.

Carrie Bailey is the author of the Immortal Coffee series.

A former librarian, she has lived on three continents, enjoys science fiction, art, living a minimalist philosophy and drinking coffee.


  1. Moving and all top familiar. Thank you John, thank you Carrie.
    Bravery? It implies a choice. Mostly I don't think our disabilities come with that luxury.
    I too usually avoid talking about mine. It changes nothing, feels like whining, and gets dull.

    1. You know, I'm just thinking about whining and I've been told that it's hard for people to recognize how difficult the issue is IF I whine and I also sound like I am JUST whining if I do. And everyone is telling me to express more or express less. In the end, I just go with less, but I'm not sure that gets my needs met.

  2. That's a shame friends and family would abandon you. Continue on, Carrie, no matter what.

    1. Thanks Alex, that means a lot. I try not to lose compassion for them, but you're words are exactly what I often need to hear, continue on. :)

  3. Thank you both for sharing. I generally avoid talking about my health problems as much as possible, because I too have found it to be alienating.

    1. I have exactly that issue, too, but I also find that when the exchange is mutual, it can be very supportive. I think that's part of why I decided to reach out on this topic. I felt isolated, but the few secretive chats I have with people also struggling have made the burden lighter and I've learned some ways to cope, too.

  4. You realize I will be calling you Count Bailey from now on ;)
    Grandpa became deaf and now my mother. It's not easy.

    1. I am perfectly and totally thrilled by any grandiose title. But, why not Countess?

    2. Of course Countess, I stand corrected :)

  5. Carrie, that's too bad those professors weren't being understanding. It's ironic that they were educators but were closed to being educated about your condition.

    1. I think part of the reason is that I have an extremely high IQ in about the top 0.05% of the population. People who know me tend to assume that I can do anything with my brains and so no health problem could really be an issue, but then since I was often quicker than them, I could fake a health issue if I wanted, they might not catch it and really just be partying too hard.

  6. People have such a hard time understanding something that isn't visible to them, and comprehending how much it impacts someone's life. Even those with visible disabilities are mistreated and undervalued by people. It's awful that those close to you abandoned you through it. It's disappointing that people can be so dismissive.

    1. Thanks for the warmth of compassion, Shannon. It is awful, but family support isn't one of those things guaranteed in life and it was part of a pattern that simply continued - just most obvious when I was in need. And some friends did remain. They were there when I was at my best and my weakest. And to know them has been the best part of my life though revealed in a difficult way.


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