Families with disabilities are the walking dead

Call Marionette Miller-Meeks RIGHT. NOW. 202-225-6576

Dead woman walking.

I recently read that acetaminophen - Tylenol - is not uncommonly used in suicide attempts in Europe. An overdose takes a few days to kill you, and at first there are few symptoms. By the time there are, it’s too late. You’re in liver failure, then cascading organ failure, and then you’re dead.

And what is it like to live during those days, knowing you’re a dead person, but not yet?

It’s like this.

At 1 AM Wednesday, the House Rules Committee is going to start the next step of stealing more of our money from our disabled kids and family members in order to give it to the already obscenely rich.

All last week, after the Commerce committee decided to gut Medicaid, I could barely move or speak.

I had to, though, because if there’s no Medicaid, no respite, ever, from caring for a kid who even the state agrees needs 17-24 hours of care per day; no backup to our private health insurance; no primary insurance after he’s 26; no day care (day hab), no job coaching, no voc rehab, none of the things that make our lives possible, I HAVE TO work and speak. I have to keep my job to pay for health insurance and make as much money as I can and have as much health insurance as I can to take care of my kid as well as I can for as long as I can.

I have to move and speak because I have to work because I have to care for this kid as much as I can for as long as I can, until I can’t.

Even though I’m afraid it will kill me, probably within five years. Even though I’m afraid it won’t kill me, and I’ll have to live the life I’ll have without Medicaid.

And what about my kid? I can’t think about my kid. And I sure as shit am not going to tell you about my kid, parade how he will suffer for anyone else’s entertainment.

All because all of us decided to let the rich steal our money from kids with disabilities.

Maybe not tonight. Maybe we’ll stop them for now. But they’ll be back.

I always thought I was a pessimist. I was wrong. I thought we would find our way to something better than this.

Churchill said that Americans can always be counted on to do the right thing, after they’ve tried everything else. He was wrong about some things, though.

(I’m uncomfortable that this is so dark. I want to apologize, but I won’t. It’s a diary. This is what it’s like to be me, a person with a family member with a disability, at this moment in the US.)