Somewhere, in the darkest corners of the Internet, lurk packs of people who devote themselves solely to seeking out disability and chronic illness bloggers to stalk and harass them, accusing them of faking or exaggerating their conditions. A few friends of mine from the online disability communities I hang around in were recently targeted by them, and it exposed me to a world of viciousness I could barely comprehend.
Some of the people in the groups were sick or disabled themselves, and seemingly all had atypically easy roads to diagnosis. I saw the stories endlessly repeat of going to a doctor for a routine checkup or minor unrelated issue; having a symptom caught, a specialist called in, a proclamation made and a treatment plan begun. People with this kind of story, at least the ones in these groups, couldn’t seem to comprehend why someone might hope for a positive result on a diagnostic test because at least it’s an answer, a name for what’s wrong. They talked about the importance of being “as normal as possible,” and considered talking publicly about illnesses and disorders, especially the uglier sides that people don’t often talk about, to be merely attention-seeking behavior. Others were apparently able-bodied, the type of person who loves to talk about “snowflakes” and “SJWs,” and took up the crusade against alleged disability fakers perhaps just for something to do.
As I scrolled through their threads out of outrage and morbid curiosity, I saw screenshots of posts I could have made myself – pictures of weird health problems, advice about mobility aids, rants about inaccessibility, gaslighting, and gatekeeping doctors like the ones we all seem to encounter at least once before we find a compassionate one. People being messy and vulnerable about the ways bodies can sometimes just be hard, their words stolen and used to police the same communities they were seeking comfort in. A sick fear settled over me; suddenly the writing I do about living in a body that frequently feels like a malfunctioning machine no longer felt safe. If I continued to speak out about disability as it relates both to my body’s limitations and the ones imposed by a world that simply wasn’t built for people like me, would I be the next target?
The thing is, “faking disability” the way the internet talks about it, going by my experience, must be a pretty rare thing. I spent my entire life surrounded by disabled people. I grew up in special education classes and programs for disabled kids, making friends with kids across the disability spectrum, then transitioned into work in disability services and participation in the greater disability community as an activist, self-advocate, and general shit-stirrer. I formed friendships with hundreds of kindred spirits around the world through the writing that we all did about the various different quirks of our bodies and brains that made them a little different from most people’s and made our journey through this planet a little more challenging and a little more interesting. And in 36 years of this, I never met a person who was feigning their disability to scam the system, advance themselves by taking advantage of others’ sympathy, or “get attention.”
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Forced to Fake It
I did, however, run into the dirty secret almost all of us who live a disabled life have learned the hard way: sometimes, “faking it” is thrust on us.
A co-worker of mine whispered to me when I told her I was going in to be assessed for paratransit services, “Go in your chair, and tell them you can’t get out.” Like me, she is a semi-ambulatory wheelchair user; like me, she has navigated the difficult but necessary work-arounds that sometimes arise for people like us. Both of us know what it feels like to scoot on your butt, dragging your empty chair down the subway steps. Both of us have dealt with the frustration of waiting half an hour for a city bus only to be told it’s too full for you and your chair. We know that there are too many variables; that being able to make a trip independently on a good mobility day, in good weather, when the station elevators are working is one thing. Wheeling through snow, on a day of high pain or fatigue, and dealing with stairs or going miles out of the way to the next accessible station is something else entirely.
There’s a current that runs through our communities, supporting each other in being the kind of disabled that will get us what we need, because we know that there are too many agencies out there with the ostensible purpose of helping us that still believe that as long as we technically can do something, like crab-walking our way into a subway station, we should have to do it. Like kids in a classroom, we pass each other the answers to tests: say this on that benefits application, not that. Use this careful wording in the ER so they’ll give you pain meds that work. Here’s how to stress your body out enough that it will do that weird thing tomorrow at your doctor’s appointment, because sometimes our bodies love to just randomly work perfectly right when we most want them to fail, right when there are witnesses present who could maybe tell us why.
Maybe some of the hysteria around faking comes from people who have witnessed the ways we teach each other how to perform disability. How to “fail” the right tests to get needed accommodations and access to resources. How to build a system of supports around ourselves based on how much we can do and how much help we need on our worst day, even if we have to go get assessed for them on our best. But instead of questioning why someone might want to trigger a symptom in time for a doctor visit or claim they can’t stand up in the transit office when they can – just not for very long without falling down, shouldn’t people be questioning the doctor who doesn’t take a patient at their word when they describe their symptoms? Why is no one questioning the transit assessor who doesn’t understand that being able to demonstrate that you can get out of your chair and pull yourself up a couple of steps in the office doesn’t mean that you can travel the length of a complicated transit system on your own every day?
The only disability-faker problem I’ve ever seen in my whole life as a disabled person living intentionally in a community of disabled people is the problem of being forced to act out our disabilities in a way that makes those in charge of deciding our fates comfortable. Maybe if we, as a society, started believing disabled people more – letting us direct our own care in ways that our experience has taught us will actually help, listening when we explain what our bodies can and can’t do instead of demanding constantly that we prove it, planning assistance based not on whether we could do a thing if we really strained ourselves and put ourselves into undignified positions but on whether we could use some help to do it comfortably – there would be less public cries for help and understanding because we’d be too busy living fuller and more satisfying lives.
But then, what would people complain about on the internet?
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