Gratitude in surviving. Greed in living.

Jessica JewettToday a lot of disabled protesters were arrested for protesting the proposals in the new health care bill at Senator McConnell’s office. This statement explains why, posted by ADAPT, the organizers.

I saw Trumpist conservatives (different and more aggressive than average thoughtful conservatives) saying they bet the disabled people who protested Senator McConnell’s office today weren’t even disabled. “None of them really need wheelchairs.” That was a direct quote. Someone else on my Twitter said, “I wouldn’t describe it as ripped out of a wheelchair.” I told the person on Twitter, “Then you must never have been pulled out of a chair against your will by a group of men.” That happened. Reporters filmed the whole thing.

People are not talking about the real issue here, which is the disabled, chronically ill, and financially disadvantaged are now living in real fear that what little help we receive will disappear if this trend of legislation continues. Of the entire issue at large, people are saying things like, “But Obamacare!” and nit-picking the way we’re describing what happened at the protest. Nobody ever expects us to protest. They aren’t willing to acknowledge that people like us can easily be swept aside and ignored because it’s not sexy government like dropping big shiny bombs on Muslim countries or investigating a big orange egomaniac for obstruction of justice.

So when a bunch of disabled people congregate to exercise their constitutional right to a peaceful protest, which it was, everybody gets uncomfortable and starts side-stepping the issues of WHY they’re protesting. It’s exhausting.

I’d like to make a few points clear.

Just because we’re disabled or chronically ill doesn’t mean we should be grateful to taxpayers for allowing us the minimum of survival. We have the same rights to life, liberty, and the pursuit of happiness like everybody else. The current level of support we receive is for the very basics of survival. Nothing beyond shelter, heat, food, and water. My home health caregiver is technically not allowed to help me with my art projects, or to paint my nails, or anything little like that even though my hours provided by the state Medicaid system allow for plenty of time for LIVING. I’m only allowed to eat, get washed, make sure I’m not sick, and have my immediate little area swept or dusted. Anything else? Well, goodness no. That might suggest disabled people want more from life than rotting in front of the television.

People in wheelchairs talk about having old, broken, outdated equipment because they can’t afford more. There’s a general consensus put on us by outside pressure from political parties that we’re supposed to be grateful for equipment held together with duct tape and that give us pressure sores. After all, it could be worse. We could be sitting on the floor.

The problem is the way we get treated when we ask for help in living instead of surviving. If I express anything except gratitude for having a wheelchair that doesn’t fit and taking over a year to prove my need for a new wheelchair, then I’m seen as a leech on the system. I’m only allowed to be grateful for having food, water, and shelter. Never mind the idea that I might have dreams and aspirations of my own, yet I’m trapped in a cycle of poverty that my own government makes it impossible to escape.

You heard me.

Social Security, Medicaid, and food stamps are so minimal that I can’t make ends meet from month to month. I’m always robbing Peter to pay Paul. The system is constructed in such a way that it forces my exclusive dependence or it forces me out of it altogether. A job while on SSI? Hell no. I’m only allowed to declare $20 extra per month before they start removing it from my check, which doesn’t meet my survival expenses anyway. Work hours? Ten per week. That’s it. Savings? Absolutely not. SSI will cut your benefits if you start trying to save any money like every other American out there. Food stamps? Oh honey. They’ll take your food stamps amount out of your SSI check. It only looks like you’re getting extra help. You’re not. It’s just shuffling one resource to another and generating miles of extra paperwork. Marriage? Forget it. I can only get married if my spouse can cover all of my living and medical expenses because “I do” makes our incomes combine into one household.

Medicaid is another ball of sunshine. I’m allowed one new wheelchair every ten years even though the best chairs are not designed to last more than six (on average). Getting a new wheelchair takes anywhere between six to eighteen months depending on how the paperwork blows. There are people who spout, “Oh, you can just go to such-and-such medical supply place and get that Hover Round my grandma uses. You can afford that without the government!” No. No, I can’t. I have Arthrogryposis, which is classified as a very complex and difficult condition. I can’t sit upright on my own power. I need custom parts built to fit my body. The least expensive chair I’ve ever had was $15,000. You try buying a $15,000 car every six years on an income of $700 per month. It can’t be done. It’s not possible.

Do you see the pattern here? Large swaths of the American people are fine with having tax dollars going toward the care of the disabled and chronically ill as long as we don’t ask for too much. Survival is acceptable but how dare we demand to be allowed to pursue happiness like everybody else? In America if you’re disabled, you have to be grateful for the minimal assistance you receive while never, ever expecting to live out your dreams or aspirations. If you raise your voice and say, “This proposed legislation is going to put us at risk,” and if you dare to protest those proposed changes, you’re suddenly perceived as ungrateful, a drain on the system, fake protesters paid by liberals (yep, I saw that allegation today), or “causing a scene”. Because, as you know, the disabled, chronically ill, and financially disadvantaged should never dare show their faces in events that affect their lives far more than the politicians and taxpayers arguing over how far survival actually goes. It makes people uncomfortable to see us congregating and getting organized. That’s a threat to their ability to pretend like the help we receive through their oh so kind tax dollars allows us to have meaningful lives.

Be grateful for your duct tape wheelchair and your frozen processed dinners. We give you plenty of money for Social Security and Medicaid. And you’re really not going to feel these little cuts we’re hoping to make!

Yes. Yes, we will. Every time there are “small cuts to Medicaid”, some piece of equipment I need is suddenly no longer covered or I’ll go to the pharmacist and he’ll stare inexplicably at the computer screen when he tells me I must now pay out of pocket for my prescription. All of my medications are the generic versions and none of them are covered anymore. I had to stop taking my medication for a sleep disorder because I can’t afford it. I have no dental. I have no vision. I have no physical therapy. I have no mental health care. I have no gynecological care. By the way, Planned Parenthood was my source for gynecological care but the current administration wants to de-fund that too. Basically, if I get shot, I’ll be covered. If I want to change medication for my chronic pain or my PTSD, I’m out of luck. Do I need a custom built bath chair since I haven’t actually been inside of a shower in literal years? Nope. Taxpayers are okay with paying for a plastic bench but I get blank stares and shrugged shoulders if I suggest a chair built for a complex disability. We’re talking about PVC pipes and mesh, people. This isn’t NASA technology.

Now the government is proposing more cuts? What else could they possibly take?

By the way, would you like to see my pressure sore? Maybe it’ll stop being so easy to reason away if I start posting gross photos of my sores. I literally have one on my arm right now that my friend had to buy me bandages for because my doctor can’t give me things like that without first writing a prescription and waiting for the pharmacy to ship in those bandages. A week means the difference between no infection or going into the hospital.

You think I’m joking. You think it’s not a big deal. You think we’re ungrateful if we ask for more than basic human survival. You think we actually want to be in this system.

Welcome to the Social Security and Medicaid systems as a quadriplegic. You’ll survive, but you won’t be given a chance to live.

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