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!

Leave a Comment » | Fatigue, Frustration, Isolation, Limitations, Pain, Politics, Rants | Permalink
Posted by chronicrants

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!

2 Comments | Educating, Healthcare, Medication, Politics, Raves | Permalink
Posted by chronicrants

My wheelchair does not give you permission to touch me

June 13, 2018

Last weekend I marched in Boston’s Pride Parade and it was wonderful! I had a fantastic time. But it wasn’t all perfect.

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There were a few things that bothered me about being in a wheelchair, and a big one was people touching me without permission.

It works the way many other parades do: we marched, and people on both sides of the street watched us. Some waved, some cheered, some yelled, some smiled excited smiles. And some high fived the folks passing them.

I didn’t want to high-five people. There were several reasons. One is germs. It would be hours before I could wash my hands. Also, gluten. I wanted to eat the sliced apple I brought with me. With my hands. I couldn’t contaminate them with the gluten that was probably on strangers’ hands. Also, I didn’t want to eat an apple after high fiving dozens of strangers because ew. Germs again. And then there was the pain. It hurts to high five 1 or 2 people, never mind dozens.

I love to wave at folks as we walk in the parade, but I quickly learned that people used that opportunity to give me a high five, so I had to stop waving. That was sad. I picked it up again in areas where the crowds were behind barriers, but most of the streets had the crowds practically on top of us. As we went by, I tried to keep my hand in my lap. (My other hand was already holding the large 45-foot flag that our group was carrying.) Sometimes I would say, “I’ll pass” or something similar. Often that was good enough. But not always.

Too many times, the person would then touch me. They would touch my shoulder or my arm. One touched the bag in my lap. It was weird and awkward and gross.

It could have been worse. Luckily, I wasn’t in so much pain that even a tiny touch was excruciating. But I could have been. Thankfully I’m not generally adverse to touch, but I could have been.

I love Pride. I yelled “Happy Pride!” to so many people in the crowd that my voice was a bit hoarse by the end. I adore Pride. I love seeing tens of thousands of people celebrating who they are and who they love, supporting their loved ones and our community, and showing the world that who we are is not “wrong,” despite what so many people (and governments) say.

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I love Pride, but that doesn’t mean I want to be touched by strangers without permission at Pride. Or any other time.

I know I am not alone in this. So many people have similar experiences. There is something about having a visible physical difference that makes people think they have a right to your body. It’s like when strangers touch a pregnant woman’s belly without asking. WTF?! Just because you can see that someone is pregnant or in a wheelchair, doesn’t mean you “get to be part of the experience.” It doesn’t work that way.

Part of it is also that people want the “poor woman in the wheelchair” (that’s the attitude, if not the conscious acknowledgment) to be included. Here’s the thing: including me means giving me control over my own body. It means accepting my wishes for my body. Touching me without permission is not including me. It is disrespectful and gross. You don’t do that to others, so don’t do it to me.

At the end of the day, one of the women who had pushed my wheelchair for part of the parade told me that she felt bad for me. She saw what was happening but didn’t know what she could do. No one high fived her, because she didn’t have a free hand – they were both on the wheelchair. Yet, strangers didn’t touch her. Think about that for a second.

Many people looked awkward in the moment. Their hand was up, and they had to do something so instead of putting it down or high fiving another person, they touched me. Did they later realize that was an odd thing to do? I hope so. At the very least, maybe they will read this (or one of the other things I have written about this incident) and think twice next time they are tempted to touch a person in a wheelchair without permission.

Because again, if you wouldn’t touch the person pushing my chair as she passed by, then you shouldn’t touch me, either.

Maybe next time we’ll talk about all of the photographers along the route who took my photo only because I was in a wheelchair. Not cool, folks.

By the way, I want to give a huge shout out to all of the awesome folks who made it possible for me to attend Pride! The local Council on Aging loaned me a wheel for free (many do, so check your town’s Council on Again if you need to borrow a wheelchair, cane, walker, commode, etc.) Several folks volunteered to push my wheelchair during the parade. At the last minute, someone volunteered to push my wheelchair around part of the festival that follows the parade (and thankfully I was able to walk and push it the rest of the time.) Someone volunteered to take the wheelchair out of my car and get it downtown with me. A stranger in the subway station helped me get the wheelchair onto the train. And stranger on the train offered to help me get the chair off the train and then put it in my car for me. I can’t lift the wheelchair into or out of my car and I can no longer walk as much as I would need to in order to march at Pride, so without these folks, I couldn’t have attended Pride. I was exhausted afterwards and spent 2 days at home recovering, but it was totally worth it. Some folks were weird, but many others were kickass, and it’s important to remember them!

Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Rants | Permalink
Posted by chronicrants

Totally. Freaking. Out.

June 2, 2018

I just got a letter in the mail that’s bad. Very bad.

I’ve been having a hard enough time lately. I’ve been feeling really lonely and isolated. I want to date but don’t feel up to it. My birthday is coming up and I feel time passing me by. My youth is disappearing and I haven’t had a chance to live it. That’s all horrible enough, and I’ve been struggling to deal with it.

But then the letter came.

From the Social Security Administration.

Once upon a time, I became too sick for work, so I applied for social security disability benefits. I was denied.

I appealed. I was denied.

I appealed again. I went before a judge. And finally, I won! That process took two and a half years. Two and a half years of trying to prove that I really was as sick as I was. I finally was able to breathe in July 2014. I was relieved, and could finally focus on my health. During that time I was so stressed out that it was hard to make any improvements in my health.

I knew then that I would face a review of my case every few years, but time went by with no review, and I mostly forgot about it. Occasionally it came to mind, but not often. Thanks to budget cuts, they didn’t have the staff to do frequent reviews.

But today I got the letter in the mail: they’re reviewing my case. I have 30 days to mail in the form. Shit shit shitty shit shit.

It’s a deceptively simple form, just 1 page double-sided. But the questions are hard. List doctors have I seen, tests I’ve had done, and evaluations I’ve had in the last 2 years? And there’s only space for THREE? Are they kidding?!? Which ones should I list? This is why I need a lawyer.

Too bad my former lawyer isn’t practicing anymore.

I have 30 days to find someone new, interview them, hire them, set up a meeting with them, and get their help with this shit. Because this time, I’m getting a lawyer from the start. If they’ll work with me.

Is my health better, the same, or worse? Um, some aspects are better, some are worse. But what will my doctors say if they’re questioned? You see, these questions are tricky!

And it gets worse, because I there is a very likely chance I will be denied, and will have to appeal. And what happens then? Will I lose my Medicare health insurance during the appeal? If I do, then I will also lose MassHealth. And without steady income coming in, I could lose my affordable housing, for which I must prove financial viability. As it is, my income is “too low” for affordable housing, and I had to use my assets as proof of my ability to pay. Without any income, will that be enough?

And what will I do without any income?! I will have to start cashing in my investments pretty soon. As it is, I manage to sort of make things work, but the numbers in my bank account have been slowly moving down. This will make them move down a hell of a lot faster.

There’s a chance I won’t be denied. An incredibly slim chance. I’m not holding my breath for that.

What can I do in the meantime? It’s a Saturday evening, so I have to wait a day and a half before I can even call a lawyer, and who knows how long it will be before I can speak to one!

I’m trying to stay calm. I’m going to ignore the rest of the things I wanted to do tonight (except my physical therapy, because my health doesn’t magically improve just because the government is being a pain in the ass) and try to rest with tv and knitting, two things I find relaxing.

And I will hope that everything works out. Maybe tomorrow I’ll buy a lottery ticket. Because nothing would make me happier right now than knowing I can just throw that form in the trash because I don’t need it. Or maybe I can marry someone rich (as if I’ve had any luck in the relationship department anyway.) The thing is, there just aren’t that many options.

Happy birthday to me.

10 Comments | Frustration, Job, Politics, Rants | Permalink
Posted by chronicrants