Quinn advocating for healthcare & for immunosuppression bill & PKD research 2013
So, it’s been a few weeks since the Election to End All Elections and I was in shock (and still am), like millions of other people.
Since then, people have sent me personal notes and I’ve read and heard first hand that Secretary Clinton supporters weren’t doing right by the country. I’ve heard that we weren’t giving President Elect Trump the chance to fix our country and “Make America Great Again,” yet here I sit terrified for my kids, my family, our very well-being, even while I wait for him to do things that might give me a reason to feel better about him being president. He hasn’t given me any reason to believe that he can and will lead in a way that helps entire groups of marginalized people, including those close to my heart, people with disabilities.
I assure you, there are many more people besides myself who have and who are going to write more eloquent pieces about the fear around this presidency. I will, however, tell you the truth about how it feels to be on my side of Trump’s Great America.
A few people I care deeply about asked me for specific examples of how the Trump presidency scares me, in relation to the disability community. I had to clarify that I meant, “disability community” as a whole, but I want to tell these people how I see it for the community in my own home, for the humans I’m raising.
Probably one of the most dangerous, yet will not ever be accurately measured, is the culture of hate I believe will be created for people who are different from the typical, or the norm as seen by the new President and many of his followers. When you see a presidential candidate mock the disabled (no matter what he says he did, we all know), fire up a crowd to yell and fight against protestors, offer to pay the legal fees for anyone who is violent towards an objector at a rally, and no one stops him, we are in deep, serious trouble.
One day, we’ll have news coverage of an incident of that leads us back to Trump Incited Culture (TIC) but until then I’ll tell you my kids have enough issues with their challenges than to step back in time to a place where the disabled are openly mocked and forced to be hidden and not be a burden to society. Here’s a story just about what is going on – just in schools – with a hate culture as reported by Southern Poverty Law Center. Here is something about hate crimes on the rise by CNN for all marginalized groups.
We recently learned Rep. Tom Price is Trump’s pick for Health & Human Services. You know what Tom (who happens to be our Rep and I’ve met with before) would like to do? Dismantle Obamacare and leave us with what? I don’t know and can’t yet determine. And that terrifies me. I’ve been public about our own health insurance coverage and wrote something the first time we had an affordable policy under Obamacare, mostly because companies wouldn’t be able to charge an exorbitant amount for preexisting conditions, which was our situation in the past. It made owning a small business nearly impossible. Unfortunately, owning a small business was about the only way we could see our kids through 15 years of medical and mental health trauma and we’re still not done. Here’s more explanation about preexisting conditions and coverage – you’d better hope you had continuous care if his plan goes through or you are out of luck. I’m confused about how he wants to handle “high-risk” patients (hello, that would be us) and the option he was pushing has failed and gone underfunded in many states.
Mental and Medical Health
Obviously this is closely tied to healthcare coverage. We are a typical family that gets caught in the middle of too high of income to get services and discounts of any kind and we don’t make enough to pay for the thousands of dollars in care our kids require. Kidney transplant? $175k, liver? A reported $250K. Monthly labs and appointments, $4k. Medication runs about $4k a month. Throw in a couple of hospital stays for the kids each year anywhere from $10k-25k (each) and there’s no way we can have food and shelter, which we’ve grown fond of and have worked hard for.
That isn’t to say we think everyone else should be paying our way, but I do think that we as a society owe it to each other to help our people get basic, life-sustaining care. We’ve put off our eventual retirement by several years, we’ve spent through savings, hindering our retirement more. I’m fairly certain you don’t wish my children dead. Truth is, if they were on dialysis ($7-12k per month each child), everything would be 100% paid for by the government, yet they only cover 36 months worth of anti-rejection meds and after that, we’re on our own. The meds come to around $2k per month per child. I’m not a math genius, but it seems like we should cover transplant meds to save on costs of dialysis, no? Or let’s throw quality of life out the window, because dialysis can keep them alive. Here is a bill we’ve spoken to our reps about and it’s H.R. 1428.
Let me just say we’re already mostly out-of-pocket for mental health services, although the kids’ psychiatrist is, luckily, under our policy. Until December 31, then we’re on our own if we want to continue care under him. After a PTSD-inducing event happened to me a few years ago, I spent over $10,000 in out-of-pocket mental health treatment – just for me. I was able to seek out care providers that worked with my kind of trauma and I even tried alternative treatment. I’m grateful I had the care, or I might not be here to write this.
Do not be misinformed, the United States Attorney General is important to my family. Trump’s current pick for the job is Sen. Jefferson Sessions, who is well documented in his votes and actions and words is against equality for people – especially kids – with disabilities. Here’s a great, short statement by ASAN about this choice. You know what that means? He’d like my kids excluded from attending school in a regular classroom. He’d prefer for typical kids not to have the benefit of meeting my kids and learning to work with all kinds of people and personalities. He’d prefer to my kids to suffer educationally, socially and economically by making sure they are warehoused in classrooms where they don’t get the benefit of working with all personalities and styles either. Age them out without access to education, which is currently federal law. He’d rather segregate our kids… typical to the right, damaged the left. Let’s not leave out his choice for Education Secretary, Betty DeVos. I could tell you what I think, but this piece on Mother Jones says it all, including excellent reporting and a quote from their article, “Education historian Diane Ravitch believes that—if confirmed by the Senate—DeVos will become the most radical, anti-public-school education secretary since the Office of Education was established in 1867. “Never has anyone been appointed to lead in the past 150 years who was hostile to public education,” Ravitch told Mother Jones.”
I urge you to keep up with this list from CNN of nominees and hires from Trump. To the person that actually told me to give these people a chance, I tell you, give them this chance is like sending a fox to guard the henhouse. These nominees already told us who they are, we know. We know from their experience. I suspect the response “to give them a chance” from some people I know is to cover up the embarrassment for voting for Trump in the first place, because they “couldn’t live with Hillary’s policies.” It’s the day I realized you were putting people, living, breathing people, already here in this country behind a “policy,” and your vision of “smaller government.” It was a day I realized our priorities are so very different. Less priority for you than policy? Groups of marginalized people including those with disabilities. I’ll add the same remarks to the people who voted on one issue – the issue of choice – while you voted your conscience – and thank God we all get to vote – you were voting against our family.
So, you’ll have to excuse me when I’m upset and concerned about my kids and my family and our well-being. You’ll have to forgive me while I talk about, write about and fight for a new cause (with my money and/or time) or four over the next four years. You were the one who put me in this position.
It’s okay though, I’m used to fighting and I have stamina.
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