People with Disabilities — Big Brother Wants to Watch You

You know you are a society in turmoil when there is so much bad news in the political world that this New York Times headline got completely overlooked in the other chaos in New Zealand and with Manafort and Mueller: “On Disability and on Facebook? Uncle Sam Wants to Watch What You Post”

Of all the dumb things this administration has done, this probably comes close to the top of my list, at least under the “dumb choices that won’t blow up the planet or destroy relations with another country” category. Here’s why:

Invisible disabilities

• 96 % of people with a visible disability have a hidden disability as well
• 73 % of disabilities are invisible

I had (note the use of past tense) two good friends, one with cystic fibrosis, the other with a brain tumor, who were constantly harassed for using their disabled parking placards. Both of them had harassment take place within 12 months of passing away. Were they disabled? Hell yes, both were serious fall risks and neither of them were supposed to walk without assistance. Did they look disabled? Not in the least.

Why should someone with a hidden disability have to deal with being continuously queried about their health status by people who have self-appointed themselves the “disability police.” I have been disabled since I was 13, and definitely faced this many times especially before I started using assistive devices to get around. Until I started using the wheelchair, my standard answer after the first time I was accosted by the “disability police” was “I’m ASTONISHED nobody told me that my 40 person medical team who authorized my blue card were wiped out in a mass accident and you are now in charge.” Bottom line, it is very very annoying, wholly inappropriate, and none of the questioner’s effing business.

On the flip side, you can’t rely solely on blue placard status to determine if someone is disabled either. For starters, each state has its own “blue card” requirements, some more stringent than others (I happen to live in a state where the qualifications are distressingly loose). Also, people can have a crippling mental health issue such as PTSD and bipolar disorder and be totally disabled while being physically fine.

Intermittent chronic disabilities

On good days I can walk (some). Most days I use a cane at least 75 % of the time. Some days I don’t get out of my wheelchair, and on really bad days, I don’t even get out of bed. So why should a video of me walking on one of my “good days” invalidate my disability? Short answer: It doesn’t. I’m just having a rare, good day.

What the video doesn’t show you

A video may show you that I’m capable of walking. What it doesn’t show you is:

1. How hard it was to get out of the car.
2. How much pain I am in.
3. How much I paid for that walking later in the day, in my sleep, or the next 48 hours (sometimes all three).

PwDs should be allowed to be stubborn

I am one of the most stubborn people I know. Even when I know I need help, I will turn it down. Even when I know I shouldn’t be doing something, sometimes I do it anyways. I eat things I shouldn’t eat. I want to live as “normal” of a life as anyone around me does. It makes me sad to pass on things that my other family members are doing. A video of me standing up and whacking at a pinata at a neighbor’s birthday followed by eating the candy is in no way proof that I’m faking my arthritis or my Type 1 diabetes. It is proof that I decided in a split-second that the pleasure of living in the moment was worth the potential downsides that I might experience later. It is proof that I am human, and a very stubborn one at that, nothing more.

PwDs should be Allowed to use the Gym

Just because I am in a wheelchair, doesn’t mean I am banned from the gym.

1. I do rehab there (24 surgeries, and 29 broken bones all from individual accidents, not 29 at once)
2. Sometimes I do “pre-hab” there, like to strengthen my weak quads before yet more knee surgery
3. It is helpful to have someone supervise me so I don’t do anything dumb (see section above on stubbornness).

Seeing someone exercise in a gym is zero proof they are faking their disability. It’s not the same as running a triathlon, and sometimes it is under “doctor’s orders.”

Here’s what’s going to happen if this goes through . . .

• Lots of people’s privacy will be invaded. A good rule to follow is to never post anything on Facebook that you wouldn’t want to see in court. The problem presents itself when others post their photos / videos of us without our permission.
• Many investigations will be opened.
• Some people’s lives and financial stability will be turned upside down.
• Very few investigations will end with conclusive proof that the person is faking their disability.
• Even when it is proven beyond a shadow of a doubt the person is faking, they can file bankruptcy to avoid reimbursement.

The end result will be little to no money actually recovered. If the government really wants to claw back money from people who don’t deserve it, they would increase the number of IRS agents. Each of them more than pays for their expenses. Taking money away from tax cheats has better optics. But that won’t happen under this administration, trust me.