Stand or Get Out of the Way

Every day she does it. My wife Jane hits the phone, the squeaky wheel, keeping her rising temper in check, and patiently repeating different versions of the same story to the faceless, often feckless drones supported by my hard-earned money – Congressional aides and other lackeys who serve as a protective barrier between elected politicians and the people these politicians supposedly represent. Me and you, my wife and children. Us.

She tells them, pleads with them. Please don’t lump all Medicaid recipients in the same bundle. Families living with disability come from different backgrounds, have different needs, experiences, income levels, values, voting records, and intentions. Why punish everybody the same way? Why punish anyone who doesn’t deserve it? Why punish?

My wife knows that this is political showmanship and gamesmanship intertwined, and the real outcome of the Republican “health care” plan is unknown. We know what they’ve proposed or said or written, and we know that almost all of it was done in secret. But we don’t really know anything beyond the GOP’s misguided and rather dark intentions.

We have fears, we have concerns, we have expectations. But the bizarre scenario that Trump and his henchmen are shoving down the collective American throat will remain mostly a mystery until it comes out the other end. And then, all we’ll have to do is follow the stench and check for texture.

Here’s what we do know right now.

We know the impact that Medicaid waivers have on our son, Joe, and people like him and their families. We know that simply amputating waivers from Medicaid would not only take away services and goods that support people like Joe, but would also negatively impact people who provide those services and goods. Physicians, physical therapists, fiscal agents, technicians.

We know that all of the in-kind services Jane and I provide our son at home are saving the health care system a ton of money. Our friend Rebecca is a professional caregiver who comes to our house to take care of Joe, so Jane and I can go to work and pay bills and contribute to the economy and support our community.

And we know that my son’s pediatrician treats a clientele comprised of 60 percent Medicaid recipients. You think he’s happy with the shenanigans of these bullies who are minding the store?

The spare change Joe draws from Medicaid (which is secondary coverage – we also work to pay for our health insurance) also goes a long way toward giving him a decent quality of life. He can go to concerts and we can pay recreation league fees, and take him to movies, and buy gas for our gas-guzzling wheelchair-accessible van, and so on and so on. And those weekly visits we get from the UPS guy with boxes of feeding tubes or diapers or other equipment must have an economic multiplier effect.

Now, do I believe for a minute that the cruel bastards in office will put physicians out of business, or that they even want to? Honestly, I don’t think most of them have even considered the ripple effects of their kneejerk legislation. They are way more concerned with the insidious billionaires supporting their temporary fascist surge (perpetually unhappy and insatiably wealthy folks like the Mercers and Kochs).

I keep asking no one in particular, “why do these scavengers want to hamper my family’s ability to thrive?” And, “what do they have against people like my son?” But here’s the one that keeps puzzling me: “Why did so many people who rely on government-supported services like Medicaid vote for Trump?”

There are several possible answers to the last one, of course. Some of these folks have been rubes their entire life, eternal marks in the long con, the kind that fat-cat grifters like Trump can spot a mile off. Some probably have suicidal tendencies. Some are just plain angry and hate Hillary Clinton (and have no real reason why as they mumble, ‘Benghazi’ or ‘Email,’ lacking the ability to find one on a map, or use the other one to communicate). And a few are just dumber than a bag of hair and, bless ‘em, can’t read or comprehend words bigger or deeper than “ketchup.” These folks might have been told by their pastor to vote for St. Donald. It takes all kinds.

But, what really concerns me is the ability, or inability, of people with a conscience to keep up the fight. I read something on social media recently from a friend suggesting we just let it all go to hell – let the GOP’s proposed suicidal health care plan happen and stop fighting for the dumbasses mentioned above, the willfully uninformed who supported (or still support) Trump. The message, basically: Why waste time fighting for people who could care less?

Oh, how I wish that I could afford such a luxury!

I’m still idiotically and naively waiting for the day when the civil rights of people with disabilities is considered interesting enough or sexy enough or otherwise gratifying enough to become a cause celebre for many of my progressive-minded friends. If only I knew the secret to leveraging the collective white liberal guilt just in my own little world! Hey, I’m not minimizing the conversation and consternation over race in this country, or excusing myself from it. But still, you know, a brother’s gotta wonder. Especially today of all days – June 22 is the anniversary of the U.S. Supreme Court’s decision in Olmstead v. LC, which declared that people with disabilities have a civil right under the American with Disabilities Act to live and participate in their communities.

My family is incredibly lucky to be in the community we have chosen to live in. We are deeply grateful to the friends and strangers and friendly strangers who make up a community that has always had our back. If I could clone Sautee Nacoochee, I would (but you wouldn’t like it … inside joke).

The point is, we’re just one family that has been lucky, but we exist, nonetheless, on the edge of a cliff – and there are thousands of others in Georgia, millions across the country, who would be negatively impacted by the GOP health care plan, as it stands now (something so offensive, in my opinion, as to be unfit for a bathroom wall).

Some of these families give a damn, and some don’t, but we’re all circling the same drain. My family is not willing to slide down without a fight, regardless of whose company we’re keeping on the way. Stand (or sit) with us, or against us. If you can’t decide, then kindly get the hell out of the way and let the tired people fight our fight.

P.S. But we’d prefer you stand with us.



6 thoughts on “Stand or Get Out of the Way


  2. “Choose life” I made that my battle cry, my goad, my call to compassion when I worked the many outreaches and causes like Hunger, Heifer International, and so on. We get tired, we get broken, but we have no alternative. we must – All of Us- choose life. Bless you and your wonderful family.
    Patti Petit

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