Monthly Archives: March 2020

You’re Not OK? Glad to Hear It.

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Thanks, ableism! I’ll get right on that. (Picture shows a staircase with the words “There is no elevator to success. You have to take the stairs” placed on the steps.)

Our culture is flooded with supposedly “inspirational” messages framing nonstop work as heroic. “Never let anything hold you back,” “Go harder and achieve your dreams,” and similar platitudes permeate our culture. People with disabilities are often the targets of it– “The only disability is a bad attitude,” “Don’t call yourself disabled!” and the whole “differently abled” and “handi-capable” nonsense. The worst of these are “inspiration porn”– people with disabilities used as props to inspire able-bodied people.

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Oscar Pistorius is famous, so I feel comfortable using this, but there are numerous memes just like this using images of children and everyday people. (Picture shows Oscar Pistorius, wearing his specially designed prosthetic legs and a yellow and green racing uniform, running in a race in a packed stadium. Emblazoned in large white letters across the picture is, “WHAT’S YOUR EXCUSE?” in all caps.)

Who does it serve to pretend that any admission of limitations is a sign of laziness, personal weakness, “giving up,” and moral failure? Who does it serve to frame pushing through limitations without asking for help as the highest possible good? Who does it serve to pretend that success is the natural end result of relentless work?

Who does it serve to tell people with disabilities that the highest good we can achieve is to live as if we are not disabled?

Who does it serve to pretend you are OK when you are not, in fact, OK?

I haven’t posted since July. That’s an eight month hiatus. In that time, my husband and I bought our first house. Just before closing, my mother-in-law died suddenly and unexpectedly, collapsing in front of our son as she was taking him to lunch.  While we were moving, I was bit by a venomous spider, leaving a large, blistered wound that took weeks to heal. I had a stalker, angry about something I had written, track down and contact a number of co-workers. Five days after that, I got a call from my husband’s workplace telling me he had collapsed with chest pains and was being rushed to Kaiser in an ambulance. Shortly after he recovered, our daughter had surgery, and had complications that resulted in her calling me at work and sobbing into the phone in pain and frustration. Then I had an extremely painful back injury. Then I lost my job.

That’s not even everything, and this was all before the virus. Today is Day 11 of shelter-in-place with no real end in sight.

The past eight months have brought me the greatest turmoil and upheaval I have ever experienced. The blog has taken a backseat to all this, and I hate myself for it.

I have constructed my entire adult identity around being reliable, hardworking, and extremely productive. I have been proud of my lack of work/life balance. Even in the midst of the turmoil and upheaval of the past eight months, at a time I was hiding in the bathroom and sobbing at work, barely able to get through each day, I took just two days off. I have answered work emails in line at Disneyland. I have answered work emails at midnight. I have answered work emails from a hospital bed. Our culture is awash in “Never Stop,” “No Excuses” propaganda, and I am clearly as susceptible to that as anyone else.

Yet the price we pay for that is brutal. We shorten our lives, spread dangerous viruses, and live lives that are less full. We work 70 hour weeks for companies that lay us off without a second thought. We take on punishing “fitness” regimens that drain our time, wallets, and health. We pretend that leisure is just laziness if we’re not using that time to work on a project. We even have to make our downtime about goal-setting and achievement. Meditation apps give rewards for achievements. Level up! Get those stickers! NO EXCUSES.

Even in the midst of this horrific pandemic, there’s pressure to ACHIEVE. What are you writing? What new language are you learning? Which of the 10,000 online events are you attending? How many online events are you offering to your community? What are you DOING? Don’t just sit around online, you lazy jerk! What are you DOING?

I ask again: Who does this serve? Who benefits from the propaganda that claims that smashing our bodies, minds, and lives against the rocks of relentless labor is the greatest moral good, and that any less is a moral failing?

Who benefits from a culture that demands we never admit to limitations?

When we refuse to accept our limitations, we prop up an ableist culture that sees any physical, mental, or emotional limitation as a moral failing. We prop up a culture that centers the bodies of able-bodied, neurotypical people and defines all others by their distance from that “norm.”

When we refuse to accept our own limitations, we are propping up an ableist culture that demands that others refuse to accept their own limitations, that frames limitations as laziness– as moral failure.

When we pretend that “anyone” can be wealthy, thin, or healthy with “hard work,” and that any lapse in relentless work is the “reason” we aren’t wealthy, thin, or healthy, we prop up an ableist, classist culture that serves only the wealthy and powerful. And while there are some wealthy people who “worked hard” to “get there,” they did not work HARDER than poor or middle class people. If hard work = wealth, every nurse and teacher would be wealthy. Most wealthy people inherited their wealth anyway.

Our culture supports the lie that anyone can be wealthy, successful, thin, and healthy through “hard work” because it benefits the privileged when those of us who are not privileged are fooled into believing financial privilege, thin privilege, and healthy privilege are merit-based. We are complicit in this lie when we refuse to challenge the idea that constant, unrelenting labor that ignores physical, emotional, and psychological limits is the highest good, and anything less is a moral failing.

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(Picture shows fluffy pink clouds and the words, “It’s OK not to be OK.”)

 

We are in the middle of a global pandemic worse than any we have seen in over a hundred years, and I say this as someone who had H1N1. I’m not going to list the many reasons people who live in a nation ruled by an incompetent, vindictive, childish narcissist have to be anxious. Suffice it to say: We are anxious. We are not OK.

Ableism demands that we never allow ourselves to be seen as “not OK”– not fully able. Because being dis/abled is a moral failing.

You don’t need to have a blue placard or a medical diagnosis to be dis/abled. You may not be a person with a disability, but the extreme emotional and psychological demands of this crisis– or of life in general– can leave you dis/abled. Unable to continue at the pace at which you’re continuing.

Those of us who identify as people with disabilities are right there with you. We understand. And we all need to agree together that it is OK to be disabled or dis/abled. It is OK not to be OK. Because the alternative– limitations = failure– is at the core of the ableist culture that oppresses us. We need YOU to be OK with not being OK to help us shift the culture toward greater inclusion of people with disabilities.

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Stella Young, 1982-2014. Photo credit: crippledscholar.com (Picture shows Stella Young, a woman looking cute as hell in a long-sleeved red shirt, red lipstick, and a light brown bob haircut, sitting in her wheelchair and looking into the camera with a slight smile and her eyebrows raised. The quote appears in red on a yellow background: “That quote, ‘the only disability in life is a bad attitude,’ the reason that’s bullshit is . . . No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille.”)

People with disabilities aren’t inspired by posters of athletes with disabilities emblazoned with “What’s YOUR excuse?” or the label “handi-capable.” We don’t need “encouragement,” or a lecture about “You’re only disabled if you allow yourself to be” or “Don’t let your disability stop you from reaching THE STARS.”

What we need is cultural acceptance of limitations. And whether those limitations are physical and permanent like mine, or temporary and emotional like ::gestures broadly at the quarantined world::, the cultural function is the same. It’s OK not to be OK. It’s OK to need help, whether that’s an elevator or a day off.

Every time you publicly chastise yourself for skipping a workout, taking a day off, getting takeout instead of cooking, allowing the kids to watch TV so you can have a break, or otherwise acknowledging your limitations, you are building cultural support structure around ableism. You are supporting a world that sees limitations as failure rather than as a fact of human existence.

Take that break. Take all the breaks. And refuse to apologize for it.

You’re not OK? Glad to hear it, because it means you are creating cultural space for people with disabilities by using your able-bodied cultural privilege to claim space for limitations, to show that we all still have value– and can still achieve plenty– within our limitations.

It’s important to fight for the idea that limitations and accommodations are not admissions of weakness. PwDs are not “weak” or “lazy” if we don’t do wheelchair basketball or if we need to work from home. You are not “weak” or “lazy” if you need a day off or if you don’t learn quantum mechanics during shelter-in-place.

Accommodations are not burdensome. I cannot “work hard” or “positive attitude” my way out of my physical limitations. Accommodations level the playing field so that we can achieve as much as able-bodied people. The accommodations able-bodied need for their limitations are similarly not burdensome. The more space we create in our culture for acceptance of limitations and the natural and obvious need for accommodations– the natural and obvious need to allocate resources for accommodations– the more inclusive our culture will be.

“What’s your excuse?” I don’t NEED an excuse to have human limitations. And neither do you.

 

 

 

 

 

 

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