Today I received a form response from your office reacting to a letter I wrote you several months ago in opposition of your plans to strip tens of millions of people from their health insurance. I just replied to that response, but since I got an autoreply that your mailbox “is not monitored,” I guess this will have to do.
You wrote that, “Despite inaccurate reports to the contrary, these proposals would have all permitted federal funding for Obamacare’s expansion of Medicaid, the joint state-federal program for very low-income and disabled Americans.” You added that the legislation you supported “would have required a state to pay the same share – on average 43 percent – as the state pays for every other traditional Medicaid enrollee (the disabled, blind, aged, etc.). The federal government would have paid the lion’s share of cost (57 percent) for working-age, able-bodied, childless adults,” and implied that this would have been sufficient to meet the healthcare needs of the American people.
You, sir, are a liar.
You know perfectly well that states are incapable of funding health insurance subsidies in the same way that the federal government does (if for no other reason than that states are not legally permitted to go into debt), and that any attempt to do so will bankrupt our very own state. I will do everything in my power to unseat you in your next election, and will be sure to use my blessing of a widescale audience to enlist others to do the same.
I’d offer to sit down and have an actual conversation about this, man to man. But considering your notoriety for hiding from your own constituents, I have a feeling you won’t take me up on my offer. And clearly, anything I say will fall on deaf ears. Speaking of which, if you ever do go deaf, I hope you enjoy the hearing aids that your own government insurance will provide you with. The better to hear the news reports of all the people who will have their lives destroyed or ended because you took their insurance away. I hope you hear every one of those voices, and I hope they haunt you to your soul, if you even have one anymore.
PS: Thanks for your vote today to prevent consumers like me from waging class-action suits against banks and credit companies when they commit negligence or outright fraud; it’s not like we’ve had problems with that recently or anything.
You truly are despicable.
Last night I learned that a fellow EDS advocate and friend recently passed away. Her name was Davina Shober. She was 24 years old.
I did not know Davina well, but as I read through our interactions, I am reminded of her bravery and the grace and optimism she showed during her lifelong struggle to bear the unbearable: a life of endless surgeries, bone grafts, and innumerable other procedures that left her with only one terrible question that is all too familiar to us EDS patients:
“I’m doing all the right things… so why am I not getting better?”
As a public EDS advocate, I receive several emails a week from people who have been thoroughly let down by the medical community and have nowhere else to turn. So they ask me for help and support, which I try to give as much as I can. But not Davina. Despite her unfathomable suffering, Davina’s first message to me was to give me her phone number, along with an offer to help ME if I ever needed someone to talk to. A girl who was suffering a lot more than I was at the time offered ME a shoulder to cry on, even as her own shoulders were literally falling apart. Take a moment to process that, to be humbled and inspired as I am that a girl who had so very little left for herself still found room to give. And give, and give.
Please do not send me your condolences: I barely knew Davina, and as sad as I am about this, I don’t need or deserve condolence. All I ask of you is this:
The next time someone tells you that they are struggling with an illness – listen. Even if they look fine. Even if you’d rather talk about something else. Don’t condescend, don’t ignore, and please: don’t disappear. You may feel certain that if they just got out of the house more, or “stopped dwelling on it,” or tried this great holistic diet, that all their problems would magically disappear. But no matter how certain you are, and no matter how well-intentioned, you have no idea whatsoever what’s going on inside of another person’s body. But that person knows. And if you truly love them, you can start by trusting them.
EDS is a terrible and cruel disease that decomposes you from the inside while you are still alive. It is degenerative and it has no cure or even any proven treatment. The horrors that typically come with old age become known to us in our teens and twenties; we look perfectly normal on the outside, but an MRI or ultrasound will quickly reveal all of the rips and dislocations and fractures and inflammation, with all the relentless and soul-crushing pain that comes with them, often without one single area of the body spared from the damage. It is harder and more heartbreaking than I could ever adequately express, losing pieces of our bodies, losing pieces of ourselves. It is devastating to us, and to everyone around us.
I can only imagine how hard it must be for you, the friends and caretakers, to be there for us when you know in your heart that there is nothing you can do to make it better. So I want to tell you right now that you CAN make it better. You do. Just by being there. Just by reaching out, and making time and space for us in your lives and in your hearts. Just by saying, “I know I can never understand what you’re going through – but I believe you. And I love you. And I’m here.”
We lost a great warrior in Davina. Please help to carry on her legacy, to give to others even when you feel you have nothing left to give. You might change someone’s life; you might even save it.
The actions and violent presence of the KKK, Neo-Nazis, and other White Supremacists in Charlottesville are beyond horrific – they are shocking. They would have been shocking 70 years ago; but I cannot stop thinking about the (extremely mild) consolation that existed 70 years ago, which is that at least they needed to wear masks to avoid public shame and identification. But in today’s America, even when facial recognition technology is nearly perfected, you can be the most filthy breed of human being imaginable, and you can do so with your head held high and your face unmasked.
If you can handle it (I honestly couldn’t make it all the way through), watch Vice’s coverage of Saturday’s rally. Ask yourself when the last time you saw anything of this nature and magnitude happen in America.
Now ask yourself: what has changed in the past year that would suddenly embolden these monsters to march proudly in the open with torches, swastikas, and confederate flags, while chanting gleefully about the murder of black people and Jews?
Could it possibly be our new president, who, in the wake of the attacks, equated these Nazis and Klansmen with the activists who stood against them – activists who included the brave and noble martyr Heather Heyer, who literally died fighting Nazis in America in the year 2017??
Should the friends or family of Ms. Heyer ever come across this post, please accept my most devastated and heartfelt condolences on the murder of your daughter at the hands of a domestic terrorist. I have spent much of the last day researching Heather’s life and legacy, and I am humbled and inspired by her choices, her character, her example, and her sacrifice. I promise to do everything in my power to carry on her fight and her legacy – and there are millions of Americans who promise the very same.
But one American is tragically absent from that number: and that is our president. Trump has now doubled down on his initial response to this violence, when he clearly equated the motives and actions of White Supremacists to those who stood up against them. He claims that there are “many sides” to this violence, and that it’s not up to him to call the man who drove a car into innocent protestors – you know, that thing that ISIS does – a terrorist, because such things are just “legal semantics.” I’m sure if it had been a Muslim or an African American who plowed his car into a crowd of peaceful protestors (instead of a Nazi), Trump would also be talking about the “many sides” of this issue (HEAVY sarcasm).
Can someone explain to me why terrorism isn’t equally horrible no matter who performs it? Can you explain why a white supremacist is a disenfranchised American, while a black terrorist is a gang thug and a Muslim terrorist is a radical extremist? And for that matter, why a white man who shoots up a school is the only one who gets the label of “mentally ill,” and the 30,000+ gun deaths PER YEAR don’t count nearly as much as the much smaller number of people who die in terrorist attacks? Aren’t these all at least equally horrible? Aren’t innocent people being killed either way?
And aren’t the REPUBLICANS the ones who are OBSESSED with “calling things what they really are”?
Saturday’s disgusting and cowardly attack was terrorism. Period. Every example I just gave is terrorism. So, Mr. “President” – how about you call it what it really is?
I did not think I could feel more disgusted with our president; but I think that every week, and every week I am proven wrong. To the Republicans who called Trump out on this issue, like Lindsey Graham, John McCain and Marco Rubio, you have my deep honor and respect. To the Republicans who refused to mention him by name but still condemned this act as terrorism and insisted that there can be no moral equivalency in this situation, you also have my respect, but you will have to live with yourselves knowing that you could have done, and can still do, more. And for all who stayed silent: you have lost the right to ever talk about moral courage ever again.
There are so few issues we can all unite behind: I always thought that fighting Nazis and the KKK was one of them. But now it is a gray area with “many sides.” So Republicans, if you want to take your country back – you can start by taking your own party back. Or else you can march and vote alongside Nazis. You cannot do both.
I wrote and recorded a lot of content in an effort to help stop the devastating repeal of Obamacare (not to mention the time planning a major activism campaign that, fortunately and unfortunately, I didn’t get to use), so I wanted to say a few things now that the Republican Senate failed in their effort to uninsure anywhere from 22- to 32,000,000 Americans, depending on which specific legislation they were voting on at any given moment of last Thursday night/Friday morning.
The most important thing I want to say is that this isn’t over. I really wish it was. But while this past Wednesday was absolutely a victory for healthcare rights and for basic human decency, it is not a lasting solution. Left on its own, the Affordable Care Act – Obamacare – will, in fact, implode. This is not due to the legislation itself, but rather due to early Republican sabotage which defunded the provisions of the bill that were intended to keep insurance costs down (for more details, read Steven Brill’s excellent article on the topic. Trump himself said he is looking forward to seeing Obamacare implode so that he can blame it on the Democrats – even though it won’t be their fault. In fact, if President Trump acted to enforce Sections 1342 and 1402 of the already-existing ACA (which is on hold pending a lawsuit by the Republican Congress), insurance companies will receive the subsidies they were promised to offset risk under the new law, and consumer premiums will immediately plummet (it is the reason they skyrocketed in the first place).
But this is a president, and for the most part a party, that would happily watch millions of people die (that’s not an exaggeration, healthcare is as life-and-death as it gets) and see 1/6 of our entire economy collapse if it meant that they could use it to their own political advantage.
So what do we do now?
First, let’s take a moment to celebrate. We’ve earned it. And let’s give credit where credit is due. I honor Senators Susan Collins, Lisa Murkowski, and John McCain for their honor and bravery in voting against this travesty, and all the Democrats who stood united it against it as well. But even moreso, I want to thank all the amazing disability activists out there for their diligence and sacrifice, in particular the incredible souls at ADAPT, who were dragged out of wheelchairs and thrown in prison for staging a “lie-in” at Mitch McConnell’s office. When you are disabled, it is difficult enough just to get out of bed in the morning – but these people literally threw themselves to the ground to stop this legislation from passing. Many of them went to jail. They endured physical agony to save their own lives and the lives of millions of others. They are the true heroes.
But 49 senators did not care. Remember that. This was too close, people. The bills and amendments that were proposed on Wednesday would have gotten unanimous opposition in every other first-world country on the planet. In our country, it was one vote – ONE VOTE – away from passing.
The Republicans have vowed that they have not given up on healthcare – and what I want you to do is write to them and tell them that they shouldn’t.
Yes, you read that right. Tell them not to give up. But tell them to switch tactics. Tell them to work alongside Democrats to craft legislation that would actually help the American people. Because not all of the Republicans’ ideas about healthcare are bad, and not all of the Democrats’ ideas are good. Obamacare asked the question, “How do we pay for exorbitant medical costs?” It never addressed the more fundamental question of why this is so expensive in the first place.
There are so many ways to bring down medical costs which actually include a great deal of common ground between Democrats and Republicans, to the point where even Bernie Sanders and Ted Cruz stood on a stage and expressed solidarity. We can make direct-to-consumer advertising illegal, as it is everywhere else in the world and as it was here for most of our history. We can implement meaningful tort-reform for frivolous medical malpractice lawsuits. We can allow people to purchase medications and medical equipment across country lines, where they are cheaper. We can allow Medicare to negotiate drug and medical device prices just like any other insurance company can (this alone could save 650 trillion dollars over the next decade – see Steven Brill’s additional article on the topic here). These are just a handful of examples that could dramatically reduce healthcare costs, and they share support on both sides of the aisle.
So please: write to your representatives and tell them to fight together on these areas of agreement, and encourage them to drop their (so-far successful) attempts to block sections 1342 and 1402 of the ACA. If they do this, they can genuinely solve the American healthcare crisis.
We have to work together. We can no longer afford victories that consist only of defeating our opponents. Our system used to work. We compromised when appropriate, but more importantly we tried to combine the best ideas of both sides. That on its own is an ideal worth fighting for. Will the solutions be perfect? Of course not. But increasingly, the only choices I’m seeing are for whether we move backward, or whether we stand still. I want to move forward – and incremental change is better than nothing.
Which leads me to my final point: we liberals and progressives need to do a better job at verbalizing what we are FOR, and not just what we are against. If we want a public option, we must make the case for it. Every time the Republicans start talking about the corruption, waste, and negligence of “Big Government,” we should talk about those same qualities in Big Corporations. If we want to end factory farming, decrease income inequality, and end discrimination in all its insidious forms, we must fight for those things and so much more. It is a subtle but important difference to stand for equality rather than to merely stand against inequality, and I believe that within this positive framework, more transformative arguments can be made.
And if we want to undo the ridiculous gerrymandering that has turned this country almost entirely red despite there being fewer registered Republicans than Democrats, WE MUST VOTE IN EVERY. SINGLE. ELECTION.
This is how we move ahead. Who’s on board for the ride?