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1:00pm August 8, 2013

sjw-proverbs:

This is a little random but a point I want to make: Lately, I’ve seen many people with multiple medical conditions be accused of lying. While some doubtlessly are indeed lying, it’s important to remember that most probably are not. Human health is a bit like a house of cards; remove one, and many may collapse. One health condition, one mutation, one injury, etc. can lead to a myriad of problems. That’s why most people are either completely healthy or have a laundry list.


Yep yep yep.

Plus my family just has a ton of genetic conditions.

I’ve inherited, to the best of our current knowledge, autism, a related movement disorder, hypermobility, autonomic and sensory neuropathy, early onset gallbladder disease, asthma, migraine, epilepsy, and a neuromuscular condition that may be hereditary myasthenia.

Those have themselves caused a number of conditions, including tachycardia, spasticity, frequent lung infections, and gastroparesis. Being disabled and poor has resulted in medical neglect and bad living conditions, leading to things like bronchiectasis.

Most of these things are the kind of thing that there are definitive tests for. You can’t be diagnosed without getting certain test results or having certain symptoms observed that can’t possibly be accurately faked.  Being autistic means I’m more likely to be doubted, so I’ve had to undergo extensive testing just to convince doctors things are real. 

And you don’t get things like a feeding tube unless they have conclusive evidence you need one.  You don’t get supplemental oxygen without proving an oxygen level below 88.  Insurance requires diagnoses to be made and proven in order to get medical and adaptive equipment covered. Things like SSI and services require extensive documentation of disability, to the point they turn down many people who are absolutely for real. 

Honestly I think the idea that there are tons of fakers running around is because people think disabled people have it easy. They don’t get that lying around in bed all day is only fun if you’re able to get up and leave any time you want. That most of us would give our eye teeth to be able to hold jobs. That using a wheelchair is more difficult than walking, people who don’t need one rarely want one.

And the concern about fakers kills us. It means people end up on the streets because they got denied benefits. They die of starvation due to lack of services. They die because without benefits they can’t afford the medication that keeps them alive. All these real disabled people dying because society is so afraid of a teeny number of fakers, that agencies turn away a thousand real disabled people to avoid giving benefits to one faker.

Honestly fakers do much less damage than the hysteria around them does. I’d rather a few fakers slip through than all these disabled people suffering and dying.

I’ve been accused of faking by online idiots even after posting my medical records online. Even after being thoroughly vetted by fact checkers who read my medical and SSI records, and interviewed my family and doctors. That’s how far the ridiculous terror that someone might be fake goes.

And I think that terror is rooted in a fundamental misunderstanding about how disability works. They think we get the good life for nothing. When really we struggle to survive. Having a lifelong disability is not the same as faking a stomach ache to get out of class for a day.

Also MOST disabled people have more than one disability. And most disabilities lead to other problems. I have technically maybe 20 or 30 diagnoses, but most of them can be traced back to 4 or 5 main conditions, each of which affects many systems of the body.  And nearly all of these things run in my family.