The New York Times ran an article on March 10 that’s been getting a lot of attention on Facebook. I just saw it yesterday or I’d have written this sooner. https://www.nytimes.com/2019/03/10/us/politics/social-security-disability-trump-facebook.html
The article reported that some members of Congress support a plan in which the Facebook accounts of Social Security Disability Income recipients are monitored for photos showing them engaged in activities that they allegedly should not be able to do if they are indeed disabled. For me, that would mean my bike trip photos would be used against me. That is, if I qualified for SSDI, and that’s another matter altogether https://blogs.psychcentral.com/hidden-disabilities/2018/02/going-on-disability-what-that-does-and-doesnt-mean/.
The article goes on to say that there are serious problems with social media spying. First, photos on Facebook do not provide reliable evidence of a person’s current condition. People often post photos months after an activity took place and don’t clearly state when the photos were taken. Photos can be staged to exaggerate the subject’s level of participation—for example, it would be easy to pose on a mechanical bull in such a way that it looks like you’re riding it when it isn’t turned on. A person with a physical disability might find it hilarious to post such a shot. It doesn’t mean she’s committing disability fraud.
Second, people tend to post photos of the good times when they are happier and healthier, not when they are hurting and in bed. We tell the good parts of the story and leave out the depressing details. I wrote about meeting my tiny house idol Deek Diedricksen and the next day went back and told the rest of the story, about how I was in horrendous pain the whole evening. I told the dark side of the story because someone had made a snide remark about me playing the “cripple card” at my convenience. That person and I are no longer friends, but it really upset me that people assumed I had no pain just because I don’t go around hunched over and moaning all the time.
For people with invisible disabilities, we already live with scrutiny and doubt from just about everyone in our lives. Qualifying for any safety net programs is a nightmare that leaves us feeling violated and demeaned. People try to make us feel guilty for any enjoyment we get from our lives. If we are accepting public services, we have to put on an abjectly miserable face to the world.
More and more of us are refusing to do that. We have the right to live our lives as fully as we can. If someone feels up to playing miniature golf on one sunny summer day, that doesn’t mean she’s able to go back to her full-time job standing up in a retail store. She shouldn’t have to feel like she has to hide her one day of fun. This is our social life they’re messing with–we reserve the right to put on a brave face and try to appear that we’re doing better than we are to our friends and families.
The public comments concern me as much as the article content. (I usually avoid the comments; they make me feel like Katniss in the sewer with the hissing Mutts.) I was appalled at how many people commented that they thought spying on social media was a good idea. Nobody who worries about people gaming the system has ever applied for aid. If they had, they would know it’s incredibly hard to get services. I live in a working-class neighborhood where there are a lot of bumper stickers that say things like “It should be harder to get welfare than a building permit.” First of all, “welfare” isn’t a thing. It’s a blanket term for the individual safety net programs you apply for when you’re in trouble. There is no program that simply sends you a check every month to do with as you please. The amount you get on SSDI is never anything close to what you would get working. People who apply for this aid do it because they’re not able to pay the rent, not because they want a Hawaiian vacation. If they do, they’re in for a nasty surprise. Nobody who receives disability income makes enough to justify not working if they can.
Second, I work in permitting and it is way easier to get a building permit than it is to get SNAP (formerly food stamps). Building permits are usually issued without personal attacks on the builder’s dignity. The counter person at the city permit office would never get away with coughing theatrically on your permit before handing it to you, but the guy at my Department of Social and Health Services office did that with my benefit card.
I, for one, am bloody sick of the presumption that I’m a criminal. The man who did this to me was completely excused and doesn’t have to prove anything to anyone. He even got a new Ram truck, while I nurse my 14-year-old Hyundai on prayer and 10W-30. I’ve chosen to decline SNAP even though I qualify, because the process is not worth the small amount of assistance I get (it doesn’t come close to covering my monthly grocery bill). I’ve chosen to live a modest lifestyle rather than be strangled by the safety net.
What has your experience been? There is such a stigma to talking about these things—it’s one of the ways they keep us submissive. You don’t have to use your real name if you have a story to tell.