How to value our lives

April 26, 2020

With hospitals becoming overwhelmed with COVID-19 patients, choices have to be made. Who will be treated first? If there aren’t enough ventilators for everyone, which patients will get one, and which won’t? This is a difficult conversation to have. Unfortunately, many places are putting policies in place which devalue the lives of people with chronic illnesses.

Part of the rationale is that people with certain medical conditions will take more care than people who are otherwise healthy. I understand that spending 10x more hours on 1 patient means that others will receive less care. Another part of the rationale is that the focus should people in the patients with the greatest potential health outcomes. If the choice is between saving the life of someone who is 70 or saving the life of someone who is 30, this reasoning says the 30-year-old should be saved because they are likely to live longer than the 70-year-old would, even if both recover fully. And if two 30-year-olds need treatment, one with a chronic illness and one without, the guidelines say to treat the one without chronic illness first. In fact, a ventilator may be taken away from the chronically ill patient and given to the otherwise healthy patient!

This is where these conversations often quickly devolve into which lives are most “worth” saving, both amongst policy makers and amongst everyone else. I have a lot of issues with this. Yes, I have chronic illnesses. Yes, my care could be more complicated than the care for someone who has no chronic illnesses. But does that make my life less worth saving? Does that make me a less valuable person?

In the chronic illness world, we say that our productivity does not determine our worth. That is so true. I’m biased, of course, but I think my life has a lot of value. I have not had a full time job in more than 8 years but, contrary to what many believe, that does not mean that I haven’t contributed to society in that time.

On a smaller scale, I am a good friend and daughter. I provide advice, let loved ones cry on my shoulder, celebrate good times, and more. I also do volunteer work in formal settings and provide help to many people in informal ways. (So many friends and friends of friends have sought my advice on how to approach doctors, how to research health problems, or even how to fix a computer problem. Earlier this month I even helped a couple of friends do their taxes.) I have written a book about chronic illnesses, I stop to hold open the door for strangers (pre-pandemic, that is), and I do random acts of kindness (like when a kid at the convenience store could afford the food he’d picked up, so I paid the balance – again, pre-pandemic.) I write this blog, which I believe helps people. Does it change the world? No. Does it change some tiny part of it? I hope so.

Why is all of this considered to be worth nothing simply because I don’t have a job? Infuriatingly, people are arguing that’s the case.

And what if you can’t do any of the above? Your life still has value, and you deserve to be treated as such. These are just examples from my own life. I’m sure you can offer your own examples, past, present, or aspiring to in the future.

What’s more, why should someone be treated as “better” because they are “healthy” and work full time regardless of other factors? Is a CEO who earns millions while harming others somehow superior? What about people who are racist or homophobic but work full time? What about people who steal or assault others? What about those who are just plain mean? Why is working at a job so often a litmus test, while these other factors are completely ignored.

To be clear, I am not suggesting that patients must pass tests to prove they are “good” people before receiving treatment. I am simply pointing out that there are many factors that *could* be used when the conversation turns to who is most “worth” saving, yet so often people talk about folks who receive government benefits and who do not work at jobs as having less perceived value. This hurts. They are saying that I have less value. They are saying that people I care about have less value. They are saying that we should be allowed to die so that someone else might be saved, and that this choice is being made solely due to our having chronic illnesses.

That is why I am standing up today to say that I have value. And so do you.


Goodbye food stamps

November 26, 2018

Edit 11/27/18: I must apologize to all of you wonderful readers for the errors in the original version of this post. As it turns out, the income limit for food stamps was not cut in half. The person on the phone didn’t know what they were talking about and the appropriate information was missing from their web site (both of these issues have been reported.) So that part is good!

However, I have still lost my benefits for now. The reason is that in determining the income limit, medical deductions are not counted. WTF?!?! My income had gone up, and I am now $20 over the limit. Just $20!!! However, my income has since gone down again, so I can resubmit paperwork to get my benefits reinstated. It’s a lot of effort, but worth it.

But think about how hard it was to learn this. I got a letter with misinformation. I spent 45 minutes on hold to speak with someone who gave more misinformation. I spent the night thinking my benefits were cut off. Then this morning someone called me back and explained it all. Why wasn’t that explanation put in the original letter?! The system is broken in so many ways. Not to mention the part where I lose $172 every month in benefits because my income is $20 too high. If they want people to get off benefits, this isn’t the way to do it, because this just encourages people to earn less so they don’t fall off the benefits cliff! Now back to the original post….

Benefits in the U.S. (and many other places) are majorly screwed up. Today I’ll tell you how I lost my food benefits, which I just learned about a few minutes ago.

When I first became disabled, I wasn’t eligible for the SNAP program (formerly called food stamps) because my assets were too high – meaning I had too much money in the bank. But then they changed that, and I was able to sign up. For 4 years I have received money every month to buy food.

The limits are strict. I can only buy certain kinds of food – nothing from the bakery, for example. And only food – no soap or toothpaste or toilet paper. Still, it helps a lot!

Until this year, I was getting the maximum amount for a single person in Massachusetts. It didn’t cover everything, which was worrisome. I’m small (around 125 pounds) and sedentary. How would someone bigger and more active manage on that small amount? Luckily for me, I have savings, so I used that to make up the difference. Friends of mine went to food pantries. Sucky, but that’s our system.

Earlier this year my benefits were lowered by $20. That sucked, but I knew it would go back next year when I filed my 2018 taxes, showing less income. It still surprised me that with my low income I wasn’t getting the maximum anymore. Again, a very messed up system.

And then yesterday I got a letter saying my benefits were getting cancelled. Part of the reason had to do with me not being disabled. Of course it was a weekend, so I had to wait. In the meantime, I did some research. New guidelines came out on October 1, but even so, I should qualify. So today I called. After 45 minutes on hold, I got someone. She didn’t know much and I had to keep correcting her. Finally, well over an hour after I’d called, it was 5pm – time to quit. She said she or her supervisor would call me back tomorrow. But I’d learned one thing: the income limit she used was half of what I was seeing online. I said that, and she couldn’t explain it. So after we hung up, I did more research.

In many states, there’s no asset limit, but in Massachusetts there is. Here’s how it works: if you’re not disabled, there’s an asset limit (about $2000.) If you are disabled, then there’s a higher asset limit (about $3350) but only if you earn more than a certain amount. If you earn under that amount, you can have any assets you want. If you earn over that amount, there’s an asset cap. A house doesn’t count. Cars don’t count. But money in the bank does count. I have enough in the bank to cause a problem if they look at my assets, but my income was always low enough that it wasn’t an issue.

And I’m glad for that money in the bank! It’s there for emergencies. It pays for medical expenses when there’s a month where they cost more. It will pay for my new car when my current car dies. It pays for a dinner out with friends once a month or a new sweater or two from the consignment shop. It’s what kept me from having to move in with my parents while I waited for over 2 years for SSDI to come through. I worked my ass off for that money in the bank. I spent my career working in nonprofit, which as we all know, doesn’t pay very well. And I was living in Boston, one of the most expensive parts of the country. Saving that money was NOT easy! I cut back on a lot of things to save that money. As my friend Rob said to me a few minutes ago: “You’re being punished for doing everything right except being able bodied.”

Because now that money in the bank counts against me.  But it shouldn’t.

You see, until October 1, the income limit was 200% of the Federal Poverty Level (FPL.) That comes out to $2023. That’s a tiny sum in this part of Massachusetts. Especially for someone who is disabled who could easily spend hundreds every month in health expenses. I was under that amount, so my assets were irrelevant. Then on October 1 they changed the income limit to 100% FPL. That comes out to $1012!

Think about that for a minute. In an area where a 1 bedroom apartment in lousy shape will cost at least $800 per month, the income limit is $1012. So if you earn $1015 and pay $800 for your apartment while you’re on a waiting list for Section 8 housing, you now have $215 to pay for food, medical expenses, transportation, and anything else in your life. It just can’t be done. So you have to dip into your savings. Let’s say your assets are just a bit over the limit, around $4000. How long do you think that will last you? A year if you’re lucky? Probably less. At that point you can now get on benefits. And if you have an problems where you need savings, you have spent them all and you’re now entirely fucked.

Or maybe you earn more. Maybe you earn $2000 and you have $10,000 in the bank. That’s plenty of money, right? Not really. It’s hard to live on $2000 in this area if you’re able-bodied. If you’re disabled, it’s not enough. You’ll have to take money out of savings each month. As soon as you have to pay for a car repair or two, or a couple of large medical expenses, your savings will be gone.

There’s no perfect answer. I get that. But to cut the income limit in half is cruel. To do so without warning anyone is heartless. To send out a form letter that doesn’t explain any of this and just cut off people’s benefits is both.

You know that safety net everyone is always counting on? Watch out, because the holes just got even bigger.


Feeling too disabled to protest

June 29, 2018

Like in many cities around the country, there will be a big protest in Boston tomorrow, and I won’t be there. Not because I don’t want to be there, but because my health stops me.

At first I thought I might borrow a wheelchair like I did a couple weeks ago for the Pride parade. A friend even said she’d push the chair, and I really appreciated that. That spark of hope lasted for about 45 seconds. Then I remembered the weather forecast.

Until now, we have had surprisingly not-horrible-by-my-standards weather for this time of year. But that ended this week. And tomorrow is supposed to be the worst of them all: 97 degrees and a dew point that the forecasters are calling “oppressive.” The thing is, I struggle when the dew point is what everyone else considers reasonable, so you can imagine how well I do when it’s “oppressive”! For me, that means difficulty breathing, lots of sweating, my already suffering adrenals struggling even more to do their job, more pain than usual, etc. I could end up suffering not just for a day or two. I could have a major health setback. So I can’t go.

I would like to participate in some other substantial way. I can’t donate to funds, since my income doesn’t even support my own expenses.

So I do what I can. I post a lot on social media to make people aware. I don’t know how many people are actually seeing what I post, or how many care, or how many didn’t already know what I’m posting about, but if I get even one person to vote this fall who wouldn’t otherwise, then it’s worth it.

I am trying to humanize the situation for my friends and acquaintances. For most of them, Trump’s and the GOP’s policies are horrible, but don’t affect anyone they know. I’m trying to show them that isn’t true.

Of course, this is harder because I won’t post on social media about being on SSDI or food stamps. My “real” friends know, but I don’t want to share that online. Still, I do talk about how my health insurance is at risk, and the real consequences that could bring for me. I talk about not being about to work, about being queer, about being Jewish, about being a woman, and how these policies will affect me because of those various aspects of myself.

It’s not enough, but it’s a start.

I feel incredibly frustrated and yes, even angry, that I can’t protest tomorrow. Over and over I have had to miss out on these protests. Instead, I am trying to remind myself that maybe what I am doing is helping in some small way.

And in that vein, dear reader, let me ask you to please vote! I know that many of you aren’t in the U.S. but I’m guessing it’s important for you to vote, too. And for those of you in the U.S. with chronic illness, it is especially important for you to look at who is going to be on your ballot this November and what their policies are. Our lives are at risk. We are facing limits to healthcare access, cuts to social security as well as medicare and medicaid, not to mention cuts to food stamps and housing services. There is so much more that I could say, but I will just mention these few things that on their own should worry us all. This November we will see many seats in the House of Representatives as well as the Senate up for grabs, and it’s important to vote in folks who will fight for us, not hurt us. At the same time, many governors’ seats will be voted on, as well as other state and local seats, and those are also super important. If you ever want to learn more about any of this, just let me know and I will be glad to discuss it.

Either way, if you are in the U.S. then put November 6, 2018 on your calendar and be sure to vote! And if you won’t be able to get to your polling station, contact your town or city hall well in advance to get an absentee ballot. You can vote from home!

Even if, like me, you can’t get out to protest in person, you can protest with your ballot. Let’s do this!


Shining a light on disability-related injustices

June 21, 2018

Yesterday I spoke to a reporter about health-related stuff. This isn’t the first time, and I’m pretty sure it won’t be the last. I’m also sure it won’t be the last time I bring a new (to them) subject to a reporter’s attention.

Speaking to a reporter used to feel like a big, once-in-a-lifetime kind of thing. Not anymore. As I have become more vocal about health- and disability-related issues, mostly on Facebook, friends and friends of friends have connected me with reporters they know who are writing on these topics.

I answer their questions the best that I can. When they plan to use my full name, I’m extra careful. I was clear yesterday that the article – which based on her questions seems to be about the “opioid crisis,” insurance coverage of alternative treatments, and new medications that are about to come on the market – would not be complete without also discussing medical marijuana. I was just as clear that I would not be willing to talk about medical marijuana if she used my full name, but that I would be glad to discuss it in detail without my full name. That’s my comfort level. For other people it’s different.

Still, I told her what I could because I think it’s important that the patient perspective is included. Too often in these discussions we hear from politicians more than anyone else. Sometimes they talk to doctors. But what about the people who are supposed to be benefiting from these medications?

Now here is where it starts to get a bit interesting. You see, we all have superpowers, and my superpower is getting people to open up to me. It happens without me even trying. I guess I inherited this from my great-grandmother. Apparently she would sit next to a stranger on the subway, and by the time she got off the train she knew their entire life story. My grandmother was the same way. So is my mother. I think people are happy to talk to anyone who will earnestly listen and care, which we do.

I also have an insatiable desire for knowledge. I read a lot. I talk to people to learn things. I reach out to others both to learn and because I care about them. And I’m generally sociable. Add that up, and I know a lot of random shit. Including about health and disability issues that don’t directly affect me.

That’s why when the reporter asked me my feelings about new medications containing cannabinoids (active constituents in marijuana), I not only told her my own feelings, but I was able to tell her about the controversy around these new cannabinoid-containing medications to treat children with epileptic seizures. I’m not in that community, and I made it clear she should talk to those folks to get a full, accurate picture. (My understanding is there’s a lot of concern that once these medications are available, they will no longer be able to get medical marijuana for their kids, and if the medications aren’t as effective as medical marijuana – they don’t have to be as effective to be FDA-approved – then they won’t have any good options for their children.) I also offered to connect her to them.

Over the course of our conversation, I told the reporter a bunch of things like this. Like when she asked my views about the problem of primary care physicians prescribing opioids in a one-size-fits-all manner without customizing things to each patient, I corrected her very strongly. I hear that bullshit a lot but, like I told the reporter, I have only ever heard it from politicians. It makes for a good headline, a good soundbite. But I have NEVER experienced that. Neither have my friends. Or the folks who comment on my blog. Or the people in my chronic pain support group. Or the people in the various Facebook groups I’m in. She was surprised and asked a lot of questions about this.

I felt good about correcting these misconceptions. It’s important to correct them for everyone, but especially for a reporter writing an article on this topic in a major newspaper (I won’t mention which newspaper, as part of protecting my anonymity on this blog.)

Now here’s where it gets even more interesting! At the very end, as we were about to say goodbye, I had an epiphany. After writing this post a couple weeks ago, I was able to speak to 2 different lawyers about the SSDI case review. And after we finished, one of them told me some interesting things. This is part of that superpower I mentioned – people just tell me things. And yesterday, I told the reporter.

I told her how the lawyer told me that she (the lawyer) has seen more SSDI case reviews in the last 6 months than in the past several years combined. The reporter sounded shocked. She asked a lot of followup questions.

I also told the reporter that the lawyer told me the number of case denials has increased a lot in the past year. Of course, before mentioning that I first explained how horribly high the denial rate had been before, and the impact it has on many people. Again, she sounded surprised. She asked followup questions. Including, did I think it was related to this current administration. I was clear that while my opinion was yes, that was only my opinion. I hope it’s enough, though, to cause her to dig into this. Because it is shameful that the safety nets we are supposed to rely on aren’t there for us. That’s why I also pointed out that SNAP (food stamps) allotments have gone down while the Section 8 waitlist has gone way up.

It’s possible this conversation will be forgotten in a pile of other upcoming articles the reporter needs to write. Or maybe her editor won’t be interested. Or maybe, just maybe, the reporter and her editor will see the huge impact of these new SSDI case review rates and denial rates, and they will also notice that no one else has been writing about this, so they could scoop the other newspapers. Maybe they will do some research and write it up and bring awareness to their readers that this is happening. And remember how I said this is a major newspaper? Well it’s big enough that if they report on this, all of the others will jump on the bandwagon. And then we might be able to build enough momentum to get the government to stop this fucking bullshit and treat us with the respect and dignity we deserve, by giving us the benefits we already paid for.

Or maybe none of that will happen. But I am trying, and it feels good to try.

Do you guys know of other “hidden” issues like this that we need to shine a light on? Please mention them in the comments or email me at msrants@gmail.com. I’ll do what little I can to publicize these things so they aren’t hidden any more, and I encourage you to do the same!


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