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My Life Has Quality

My Life Has Quality

Elsa R. Sjunneson

Content notes: assisted suicide, suicide, ableism, eugenics, murder, filicide

 

The brownstone has high ceilings and blonde hardwood floors, fairy lights twinkle from the loft far above our heads and the cheap prosecco we’re drinking is going to my head. A friend wanders off to have a smoke on the fire escape, leaving me with someone new to our community of friends. The conversation is light, the norm for a cocktail party, up until the newcomer makes a comment I almost miss at first, mostly because I’m so used to invasive questions that sometimes it takes a moment for them to sink in.

“I just can’t imagine being blind and deaf. I don’t know how you do it. I’d kill myself.” She says it breezily, as if it’s a hypothetical, as if my life and the concept of snuffing it out is a light conversation over canapes, and not a condemnation.

I excuse myself to the bathroom, the alcohol vanishing from my system in an instant – a reaction to the shock.

She’d rather die. It’s not like I haven’t heard it before, I have. I hear it on first dates, at office Christmas parties with my ex-husband, on twitter. But each time it’s a slap in the face.

Because to the able bodied individuals who ask, it might be a hypothetical, but to me I know it’s a reality. It isn’t just their inability to conceive of living my life.

It’s a well known trope. Fascists at the dinner table, your boss spewing white supremacy over a martini, but when it happens to you the sensation is like having your breath taken away from you.

Those ableist social constructions which so easily made their way into polite conversation, they are the ones that are now playing out as part of the dialogue around COVID-19.

In 2013, the Verbessem twins, deaf since birth, applied to Belgium’s medical community to commit suicide.  They were legally euthanized because they were going blind, and news story after news story indicated that they had nothing to live for, that they didn’t want to live in an institution – that going blind was a bridge too far. 

I remember the first time I read about their story it knocked me off my feet. I had, up to that point, been in favor of legally assisted suicide. I was the daughter of an AIDS victim, I had seen first hand what a disease can do – not just to a person, but to their family. I knew that diseases that kill are not a good thing, and I know being able to avoid the worst of them is a blessing.

In 2014 I had the pleasure of meeting Dr. William J. Peace  and hearing him speak about the connections between assisted suicide and zombie films. His work on utilitarianism and how assisted suicide of the disabled body allowed for utilitarian ideals to thrive caught me off guard.

It turned out that I didn’t believe that assisted suicide was a good idea after all – because I thought that a disabled body was worth living in, even if it didn’t operate within the same system as an able body. I especially keep coming back to that talk in recent days, when jokes of the apocalypse fly fast and loose, and I think about how he showed me that in the apocalypse, no disabled body would be deemed a good one.

The apocalypse is here and disabled bodies are already being discussed as expendable. It only took a month. Less.

I’ve been through an apocalypse before – I’ve already survived one. In the 1990s I was raised in the gay community of Seattle, WA. I remember bearing witness – to my father’s education efforts to make sure that no one else caught the disease that was killing him – and killing his friends, our extended chosen family. I know what it looks like when the government has decided that your community is a lost case, that the bodies on the line aren’t the ones worth saving – I saw how the Reagan Administration had destroyed my community – I knew his name was like poison on our lips, and the level of disregard paid to disabled lives this time around – it’s no different.

I’m a science fiction writer. My trade is in looking at the dystopic futures, the spiraling new worlds and exciting technologies that could be – and as a disabled woman it has also made me keenly aware of what is. I am good at projecting what might happen both as a professional hazard, and because I’ve read The Road and The Hunger Games. All stories where disabled bodies are disposable. I began to worry.

As the COVID-19 pandemic became more and more of a reality, I kept wondering when the question of my quality of life would become an issue. I began to fret about what would happen if I got really sick – about what would happen to people like me. Disabled friends and colleagues who work on the front line of disability politics.

Quality of life is a complicated measure. Think about your own quality of life for a second – to a non-disabled person it will be different from a disabled person. You may believe, because you are able bodied, that your quality of life is dependent upon your ability to see, or to hear, or to walk. But those of us who actually live in disabled bodies know that is not the case.

Is there any ethical way for an able bodied person, who believes firmly that their life would be worse if they were disabled to judge the quality of life of a disabled person?

I don’t believe that there is. There is no ethical barometer for the quality of life of disabled people under ableism. There can’t be, because the fundamental disregard for disabled lives is threaded through our media, our society, and our rhetoric.

Most of the time, when a disabled child or adult dies because they have been murdered by a caregiver, the internet falls over itself to express how much of a burden they must have been, and how hard it must have been.

On the murderer. Not the victim.

We live in a society where it is socially acceptable to tell a disabled person that you would rather die than live – over canapes.

Which brings us to Italy, Chicago, and New Jersey, three examples out of many – all arguing that we have to consider quality of life, and we have to consider who gets a ventilator. Shortages are real, of course, but I’ll ask you again:

Is there any ethical measure of quality of life when those in power are without disabilities?

Doctors, healthcare systems and even governments are trying to figure out how to manage the escalating need for care, and so the question becomes: who should get care? The elderly? The disabled? Will things escalate across gender or racial lines? How about who can afford care?

Who gets a ventilator? Will I get a ventilator? Will my friends get ventilators?

It’s not a hypothetical. I am not a hypothetical; I’m one of those people who might be termed less deserving of a lifesaving measure because my life is judged as being worth less. I’ve seen that judgement cloud peoples faces. Those judgements are not hypotheticals either.

They are judgements based on opinions like those held by the woman at the cocktail party. By the people who assume my partners have been volunteering with the blind, not dating me. By those who assume that disabled women don’t want children because they wouldn’t want children “like them.”

While the world shouts about washing hands and staying in our homes, disabled people are talking to each other about how scared they are of catching COVID-19. About what hypotheticals they know are realities.

Our lives are consistently devalued by society, and in the face of a global pandemic we have to start thinking about contingencies.

While non-disabled friends and colleagues are fretting about whether or not to go to the grocery store, I am wondering if I will be able to change my power of attorney so that  my ex-husband isn’t the one getting the call asking if I should be put on a ventilator. Not because he’d say no, but because it’s not who we are to each other any longer.

Because someone will look at me – a divorced, childless, deafblind woman with no family – and they will look at a non-disabled person. Perhaps an employed person. Perhaps a parent. Perhaps a wife or a husband. They will look at them and they will ask the question: is a disabled life worth the same as the other one?

I worry that they will compare us to decide who deserves to live. That this will happen to my friends. My colleagues. Your disabled friends and colleagues, too.

What I’m afraid of is that they’ll decide someone else needs the ventilator more.

I want to live. I deserve to live. I have so much more to give this world with my words and my work, with stories that I have yet to write, with essays I have yet to tell.

But I’m afraid. Because my worth is not being judged by me, or by my disabled peers.

The worth of my life has always been judged by the non-disabled. I worry that they will think like the woman at that party, who so casually shared that she couldn’t lead my life. I wonder if they will be like the doctors who ultimately decided that the Verbessem twins had the right to die because they would be deafblind.

Which way would you decide? Would you pick the 34 year old disabled woman, or the 34-year-old disabled woman if you had a single ventilator to use?

Disabled lives have inherent value. They must. And the medical community must act like it. 

 

ABOUT 

Elsa, a caucasian woman with short asymmetrical red hair, looks over her blue glasses with a half smile on her face. Her right eye is an aqua cataract, her right is grey and has a pupil. She wears pink lipstick that matches her pink and grey hearing aids. She wears a teal geometric blouse and leather jacket, and is pictured with her guide dog. Her guide dog has brown eyes and looks bored.
Elsa, a caucasian woman with short asymmetrical red hair, looks over her blue glasses with a half smile on her face. Her right eye is an aqua cataract, her right is grey and has a pupil. She wears pink lipstick that matches her pink and grey hearing aids. She wears a teal geometric blouse and leather jacket, and is pictured with her guide dog. Her guide dog has brown eyes and looks bored.

Hugo Award winning editor Elsa Sjunneson is a deafblind hurricane in a vintage dress. Her writing has appeared at CNN, The Boston Globe, tor.com and Uncanny Magazine. She’s a current finalist for the Best Game Writing Nebula Award for her work on the Fate Accessibility Toolkit. Her debut memoir ALONE IN THE LIGHT releases in 2021. She lives in the Pacific Northwest and fights for disabled rights in her “spare” time. 

Twitter: @snarkbat

Website: https://www.snarkbat.com/

 

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