Faking It: When Everyone’s an Expert

I am a perfect storm of diagnoses that people just don’t believe. I have fibromyalgia and ME/CFS due to long COVID. I am not your classical “perfectly healthy until COVID hit” story: I also have mobility issues due to a seven year old spinal fracture with slow spinal fluid leak. I use a wheelchair when I need to. Note that this is not all the time. I am also an opioid patient (see slow painful spinal fluid leak). You can bet that that comes with a lot of suspicion.

I am fortunate: my doctors take me seriously. I have heard plenty of stories of people fighting for recognition with their medical professionals, from “fibromyalgia is just what we diagnose you with when we can’t figure out what’s wrong with you” to “long COVID is a government conspiracy”. That is a special ring of medical hell and I don’t wish it on anyone.

Speaking of hell, there’s another layer where amateur detectives try to catch you out, and for whatever reason, they’re obsessed with parking placards. Videos abound on the internet (which I will not link, I don’t wish to drive up traffic, but they’re so easy to find) of people getting out of cars with placards in them and walking away, or worse, walking to the trunk and getting a wheelchair, then sitting in it and wheeling away. The person filming intends this as a gotcha. There are plenty more of wheelchair users standing up, of blind people using phones, people leaving medical equipment for a second to go get their coffee. These videos and their rabid commenters gleefully declare, “It’s a miracle!”

There are entire reddit communities built around “catching” fakers. They claim that it’s bad for “real” disabled people when we “fake” disabled people are allowed to live our lives using mobility and medical aids. Using some sort of nebulous logic, they insist that people will treat real disabled people badly because of fakers.

Okay. Let’s see what actual logic we can employ.

The Crip Tax, or why most people can’t afford to fake it

Let me walk you through the process of getting my wheelchair. I had to talk to my doctor about the need for a chair. She prescribed one. My insurance offered to cover the most basic basic model there is, which won’t work for me — I need power assist because of my fatigue issues. So I had to take out a loan for more than the average car so I could get what I need.

Aside: I am not paralyzed. There is a myth that all “real” wheelchair users are paralyzed. People use wheelchairs for a variety of reasons — fatigue (which is not the same thing as being tired), pain, numbness, cardiac problems, nervous system disorders, anything that keeps someone from walking for some length of time. People see wheelchair users move their legs and go “AHA!” Many to most of us can move.

Wheelchairs are pricey. That most basic of basics costs $150. Self-propelling in it is very difficult; it’s really for someone else pushing you. If you want a lightweight chair, you’re looking at about $1000. If any amount of electricity is involved, that price shoots up.

Who has thousands of dollars to spend on fakery? Not disabled people. Medical equipment is EXPENSIVE, and if we’re on SSDI/SSI, we only get ~$1000 a month. That’s not exactly middle finger money in the best of circumstances. In ordinary circumstances, we need to make that stretch over medical bills and rent and food and…

That’s the major stuff. The minor stuff adds up fast, in a phenomenon the disability justice community calls the Crip Tax. Need a cab? Gotta pay for the pricier accessible van. Got celiac? Best believe you’re paying more for gluten free options. All those extra dollars add up in the worst way.

We don’t want your attention

This is not a life of glamor. All that “attention” these armchair detectives think we’re lapping up is largely negative. I was having a good day a few years ago and I wanted to keep it that way, so I made use of my officially obtained parking placard and walked to the store. A man screamed at me from across the parking lot for taking up spots from people who “really need it”. I didn’t want to litigate my disability with him, so I hurried into the store, all the while he was screaming and threatening to call the police.

Does that sound like fun? That is mostly the kind of attention people with invisible disabilities get. Visible disabilities come with scrutiny, passive aggressive prayer requests, microaggressions, and more. This is not the first and only parking lot argument I’ve had, and I’ve had my employment threatened by someone who saw me stand up from my wheelchair. I am lucky that this did not become physically violent. Psychologically, it is always upsetting.

We already went through the scrutiny

Every month, I need to take a drug test. I need to fail it by a certain amount to prove that I am taking my drugs, not selling them, but I can’t fail it too much because then I’m abusing them. I signed a multipage contract about what I can and I cannot do while taking these medications. I am on some heavy hitters now, but it was the same when it was a low-risk synthetic opioid. This is between me and my doctor (and unfortunately, the government), but my doctor already did all this legwork. I don’t need anyone else demanding if I’m faking to gain access to controlled medication.

Similarly, went I went through the parking permit paperwork, I needed to justify to a doctor why I needed it, and for a long time, I needed to do this yearly. I am only just now considered permanently disabled, despite it being clear that my back will never heal. The doctor had to sign off on all of this. I cannot fake a parking permit.

And anyone who goes through the social security process knows that seventy five percent of all cases fail the first time, and fifty percent of cases fail permanently. Judges are already looking at our cases with a fine-toothed comb after lawyers agreed to take our cases. NOBODY is “faking for benefits”. I don’t care whose sister you heard about being a welfare queen, it’s not a thing.

There are already so many hurdles in place that we have to jump through. We don’t need you to add more. Society doesn’t need you to add more.

Here’s the thing: you are treating real disabled people badly

So you claimed that you’re trying to prevent real disabled people from being treated badly. All you’ve done, however, is treat real disabled people badly. Many wheelchair users can stand to grab things off of a shelf if they need to, blind people may not be 100% blind, or they may have screen readers that allow them to use their phones, and some medical devices (oxygen especially) can be detached and left for a minute while someone goes to get something. You don’t know the specifics of anyone’s condition better than they do.

The likelihood of fakery is so low, and as a disabled person, I would much, much rather someone get support they don’t need than a single person be without support when they need it. It is no skin off my broken back if someone pretends. I think it’s time these detectives examine what it is about someone receiving societal or medical support that burns their biscuits. Because that’s the real problem, isn’t it? You’re mad that someone gets to park closer. You’re mad that someone gets monetary assistance from the government. And yes, you’re mad that I sit down and still get stuff done. Why is that? And will channeling that energy into catching out “fakers” really make you feel better?