About three years after I had my stroke, I went to a funeral for a friend's husband. He'd had a massive stroke. It was a stark reminder that not everyone's stroke story turns out as nicely as mine did. While I was waiting for the funeral to begin, I heard someone say, "Perhaps it was for the best. He wouldn't have wanted to live in a wheelchair for the rest of his life."
I remember feeling like I'd been shot. I knew the woman who'd made the statement. I knew she'd spoken without really thinking, as people often do at funerals. I knew that she hadn't meant the words to sound as callous to me, not long without my wheelchair, as they did. But I still couldn't help but wonder if there was a part of her that believed it.
It was my first exposure to an attitude that's unfortunately too prevalent: that you're "better off dead than disabled." And that was just a mild manifestation.
"I Made The Right Decision"
Stella Young is an amazing disability advocate. Feminist, journalist, and blogger for "Ramp Up" on the Australia Broadcasting Corporation's Disability Gateway website, Miss Young uses her experiences as a disabled woman and wheelchair user to write passionately and insightfully about the issues facing disabled people today.
The first blog of hers that I read was about genetic testing for disabilities. She told this story about society's belief in "better off dead than disabled":
"A few years ago I was approached by a nervous looking woman on a tram on my way home from work. "Excuse me," she said. "Do you have Osteogenesis Imperfecta?" With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it's because they know someone else with it. So I was surprised by her next line. "I was pregnant with a baby with OI and I had a termination." I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn't quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, "I made the right decision." Then she got off the tram."
I was horrified. I absolutely support a woman's right to choose - for whatever reason, even if it makes me sad. The idea of a woman choosing to abort a fetus just because of detected disability (and I acknowledge that perhaps this woman may have had other reasons as well, but that was not what she said, or even implied, to Miss Young) makes me sad, but it's still her right to do so. I don't support, however, marching up to someone with the same disability as the fetus and, unprompted and with no context, telling them the story!
"Who says that someone?" I told my friend over the phone later. "Who says to *anyone*, let alone a perfect stranger on public transportation, 'My kid was going to be disabled like you...I'm glad I had an abortion.'"
(Miss Young took this much better than I would have, by the way...read about it here: http://www.abc.net.au/rampup/articles/2012/10/09/3606293.htm)
Where does "better off dead than disabled" come from, and when did it become okay to express that idea to the face of a disabled person? Are we that unworthy in society's eyes of even the most basic level of respectful treatment?
Before You Dismiss That as an Isolated Incident...
Consider a series of tweets from a Twitter friend in the UK, using the hashtag #heardwhilstdisabled:
- "'If I were you, I'd kill myself' (perfect stranger, me happily waiting to cross road in powerchair on way to work)"
- (After some responses about how horrible this was) "It was better than the drunk who shouted I should have been killed at birth as I went past the pub!"
- "Finally, the nastiest, shouted by drunk outside pub as went past in powerchair: 'You should have been put down at birth'"
It's worth noting that disability hate crime in England in Wales increased in 2011/2012 by 25% when compared to the previous year http://www.telegraph.co.uk/news/uknews/crime/9626664/Disability-hate-crimes-rise-by-a-quarter-in-a-year.html. Disabled people are not well-liked in the UK right now by the general populace. Cuts to income support for disabled people have been justified to the public with a government-supported media campaign insisting that the support system for disabled people is riddled with "scroungers", or people defrauding the system.
The actual fraud rate is less than 1%. And this is just one of the lies that forms the foundation upon which the government has built its case for systematically stripping benefits from disabled people who cannot work and declaring them fit to enter the workforce.
But that's a whole other blog entry.
I Know That I'm Probably "Preaching to the Choir" With Most of This
Maybe you could pass this post on to a non-disabled friend or colleague and ask them, politely and gently, and with the promise of non-judgement and an open dialogue if they're interested in sharing their answers with you, to really consider these questions:
- Do you believe that you'd be better off dead than disabled? If so, why?
- Where do you think that this attitude came from?
- What would it take to change it?
It's hard for me to imagine how, even if all communities were totally accessible, that disabled people will ever be regarded as full community members, enjoying all the rights and privileges that non-disabled citizens do and having their contributions valued as equal to those of non-citizens, if the "better off dead than disabled" perception is out there. This is a fundamental issue that needs study and addressing.
I certainly don't feel that I'm better off dead than disabled.
So, who has ideas about how to change this perception?
If you're on Twitter, check out the hashtag #heardwhilstdisabled. It was certainly eye-opening for me.