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06 January 2020

Elizabeth Warren’s Disability Plan – Incomplete, But a Huge Step in the Right Direction

Written by Michael Bihovsky

Please read through this policy proposal by Elizabeth Warren regarding the reform of disabled people’s rights. Skim if you have to, but please take a look.

Our current disability system, though well-intentioned, is shamefully outdated. It does not reflect the reality of what it costs to live in America today even if you are able-bodied, let alone if you have a disability that prevents you from working regular hours at a “normal” job. Instead, it actually penalizes you if you make more than $910 per month (regardless of what you receive in disability benefits, whether it’s $1 or the maximum of around $3,000 per month – and the average is on the lower end of that spectrum).

Ask yourself: could you live on $910 per month and be able to afford rent, buy food and utilities, and pay health insurance premiums (which, though a lot of people don’t seem to know it, you still have to pay even on Medicare)? Now add to your calculations the thousands of dollars that many disabled people have to pay every single month for out-of-network medical care, medications and supplements, and medical equipment, and you will have an idea of how ludicrously cruel and draconian our current disability system is. And that’s just SSDI: some people only qualify for SSI, in which case you get to keep the first $85 you make, after which 50% of every dollar you make is confiscated. (Can you believe it? A whole $85! I guess you can afford that new $4,400 a month antibiotic that is the only one in its class which Medicare doesn’t cover – which is a real example of a medication I had to take for a while recently; the only reason I’m not naming it is to avoid a frivolous SLAPP suit). Warren’s plan does much to improve these issues.

Adding to this financial burden is the fact that people on Medicare are not allowed to use coupons for new drugs, because that is technically considered to be a government kickback. So that amazing new drug that could help or even cure your disability but requires a $1,200 monthly copay – which the pharmaceutical company offers a coupon to let you pay just $10 for – is beyond your reach. The result: the people who need new treatments the most can’t legally afford them. Senator Warren does not address this in her plan, but I very much hope she will eventually, and I will try to reach her myself to let her know.

Disabled people have the highest amount of essential costs of any group of people. But unless they are privileged with a wealthy family who can help out, they are literally forced to live in poverty, where they are often unable to afford basic life necessities (let alone the high level of medical care that they require). I applaud Senator Warren for bringing attention to this vital issue, and for her detailed policy on how to begin reforming this vital system.

Advocacy, Healthcare, Politics Comments are off
03 January 2020

If we invade Iran, it’s over.

Written by Michael Bihovsky

Just to be clear – and this should really be something both sides agree on, including Trumpers, most of whom (rightly or wrongly) approved of his isolationist foreign policy precisely because they believed that it would keep us out of yet more conflict – if we enter another major war in the Middle East, it’s over. America is officially done. The cost and commitment will push us far beyond the brink of what we can incur as a nation. Honestly, we’re probably there already – but if we go to war with Iran, it will be certain.

Terrorists know this, as do the evil regimes that support them (and often are them). It is their stated aim to drag us into regional wars that cannot be won by traditional standards, so that we overextend ourselves and ultimately collapse from within, the way every single empire in history has within a short period of time after invading the Middle East: Greeks, Romans, Mongols, British, Soviets, and on and on and on. To go to war yet again – in a country four times the size of Iraq, and look how that turned out – is to play right into the hands of our enemies by doing exactly what they want us to do.

As George Washington warned in his farewell address: “[America] goes not abroad in search of monsters to destroy.”

We didn’t listen. I pray with all my heart that this time we will.

Advocacy, Politics Comments are off
26 November 2019

Bummer.

Written by Michael Bihovsky

Dear Friends and Family,

If you could please stop telling me what a “bummer” it is when I can’t do something you want me to do with you because of my physical health, I would greatly appreciate it. It’s happened so many times in the past week alone that I feel the need to address it.

First let me make clear: I absolutely know that the reason you’re saying this is because you love me and want to spend time with me. I’m truly grateful to you for that. The fact that you’re sticking with me through all of this means more to me than I could ever adequately express.

At the same time: however bummed out you are in the moment by the implications of my illness, I promise you that I am living with those implications every moment of every day. It is indeed quite a bummer, and that’s not something I need to be reminded of when I am only trying to take care of myself – a practice that is very hard for me, and which gets even more challenging when I’m left feeling guilty about it, which I know is unintended but also kind of unavoidable when you essentially tell me that I’m letting you down.

I can only speak for myself, but I strongly suspect that this request applies to anyone in your life with a chronic illness (or even someone with a bad cold, for that matter). So the next time someone you love can’t do something you want because they just physically aren’t up to it, may I suggest this small change: instead of telling them it’s a bummer, try something more along the lines of, “I’m sorry to hear it, but I understand. I hope you feel better soon.” It’s a relatively small but compassionate shift for you to make, and I promise it would make a huge difference to me (and probably everyone else, too).

Love, Michael

PS: For more related to this topic, I refer you to the iconic essay “The Spoon Theory” by my friend and fellow advocate, the great Christine Miserandino. Also check out the Circles of Support/Ring Theory of Venting. Thanks!

Advocacy, Healthcare Comments are off
01 August 2019

Marianne Williamson: You shouldn’t vote for her. But you should most certainly listen.

Written by Michael Bihovsky

I’m not saying Marianne Williamson should be president, and I’m not saying some of her life’s work isn’t… well… a bit off the beaten path. And there are views that she has espoused in the past about both physical and mental illness that are not just offensive, but incredibly and insidiously dangerous. Nevertheless, as a disability advocate, it literally brought tears to my eyes that someone on a national debate stage finally said, and I quote:

“We need to realize, we have a sickness care rather than a healthcare system. We need to be the party talking about why so many of our chemical policies and our food policies and our agricultural policies and our environment policies and even our economic policies are leading to people sick to begin with.”

Marianne said something very similar in the first debate, too. And although I don’t always agree with her conclusions, I will say that she is incredibly consistent about looking to the root cause of our country’s problems, which is pretty important if you want to actually solve those problems, and not just treat the symptoms. I am not suggesting that you vote for her (mostly because she lacks experience and specificity, and her flaws are perfect fodder for Trump’s brand of attack), but I am suggesting that you listen to her and take her seriously when merited, because her wisdom on these and other issues is extremely astute and incredibly important.

And I hope the other candidates listen to her, too We can argue back and forth for another 50 years about how to pay for healthcare, but all plans will ultimately fail if we do not address why it is so expensive in the first place (Warren and Sanders speak very well to that, too), but also why *everyone* is so sick to begin with.

When my parents grew up, there were one or two people they knew with a chronic illness. Today, 1 in 2 adults have a chronic illness, and 1 in 4 children. And if you ask me, those numbers are extremely outdated and underestimated. Think of every single person you know well. How many can you think of without a chronic health condition of some kind?

For those of you who might think it’s because we can now make so many more diagnoses because the practice of medicine has gotten so much better, let me assure you that no, it has not (at least not when it comes to most chronic issues). The problem is in the food, guys. It’s in the water. It’s in the air. It’s in the various chemicals we use to keep things clean and theoretically sanitary. The problem is literally everywhere. The question is: what are we doing to do about it?

The answer “We’ll make sure healthcare is considered a human right and not a privilege,” or “We’ll make sure everyone can afford to pay for healthcare costs” are good answers. But they are not nearly good enough.

Advocacy, Healthcare, Politics Comments are off
30 April 2019

Sickness is Not a Gift

Written by Michael Bihovsky

I was deeply appreciative of this article about the dangers of inherently seeing debilitating illnesses as “gifts” that can lead to “Post-Traumatic Growth,” and that was before I was pleasantly surprised to see myself cited in it.

Here’s the takeaway (for me at least): can we become wiser and better people because of major medical problems? Absolutely. But that’s *our* choice. It’s not automatically included in the package – a package that is filled with pain and sadness and disappointment. Anyone who chooses to find a ray of light in that darkness, to use the pain to benefit themselves and other people, has my utmost awe and respect. But that doesn’t erase the horror of the packaging. If we forget that, empathy is lost.

Sickness is not a gift – far more often, it feels like a curse. The people who take that curse and nevertheless continue to try, to fight, to hope – they are the gifts. Love those people well. And love them even more on days when trying, fighting, and hoping are simply out of reach.

Advocacy, Healthcare Comments are off
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