Snow Woes, Who Gets to Be a Disabled Writer, and Having Trouble Getting It Together? Me too.

Valentine Tulips delivered late in the snow

Snow Woes

So our week was generally discombobulated because of our giant (for Seattle) snow event – about 8-10 inches of snow. Vaccine appointments got cancelled, shipments didn’t arrive or arrived late. Mail and packages arrived late, including the tulips Glenn ordered for Valentine’s Day arriving three days late, a little the worse for wear, but still pretty.

It’s disconcerting and disappointing that our vaccine operations – already in WA state going way too slow compared to other states – were derailed by weather. As someone with multiple health vulnerabilities, I have a vested interest in vaccine operations going better than they have been, here. Please, if you care about the lives of your disabled and chronically ill friends, please write to Jay Inslee and tell him to open up vaccinations to us now. Other states have already opened to people with medical conditions AND teachers, like Ohio. Why aren’t we doing things as well as Ohio or New York state? It’s so frustrating to watch.

three deer visitors in the snow

But nothing like what happened in the South, especially in Texas, this week. Many of my friends (and a few relatives) were out of power for days in single-digit temperatures and had no clean or running water. Does this seem so impossible in a modern age, that an entire state could suffer so much from a cold snap? Weird anomalies – like Texas being on its own power grid (except for El Paso, which is on its own grid connected to other states) unconnected to other states because of a decision dating back to 1939 not be part of the federal power grid, and then further that Texas deregulated power and so all the power companies are for-profit entities, and then further than things happened like the nuclear power – that Texas relies pretty heavily on – was run by people who didn’t anticipate things going wrong at a nuclear plant in the cold, which, as luck would have it, they did. (Not bad enough to kill people, but bad enough to shut down a nuclear plant for a while.) So the cold and snow wreaked a lot of havoc and caused a lot of deaths there, due to some some decisions made not by the people there today but politicians of the past and their poor (and dangerous) choices. This was not aided by their Senator taking off to Cancun in the middle of the emergency.

Steller’s Jay

Having Trouble Getting It Together? Me too.

This week I didn’t feel great – a sinus infection thing that caused a bit of a fever – so I lost some time and didn’t feel productive, which I always beat myself up over. I’m stressed out about the lack of access to vaccines in the state and county I live in, I’m stressed out that I still have relatives dying of covid while the country continues its (too slow) vaccine rollout, I’m stressed about not being able to do anything safely, still, a year after I started quarantining due to covid and my health issues including a primary immune deficiency and lung damage from previous pneumonia, which could prove deadly in the face of this virus. People talk about hitting a wall – but it’s more like getting punched in the face repeatedly, by the news, by tragedies, by uncertainty. I mean, I feel like I’m in a losing boxing match I never signed up for. But I was reminded by one of my doctors that everyone is angry, anxious, stressed, getting poor sleep, overwhelmed, and not as productive, or nice, or living “their best life.” We are trying to survive a year of plague that has taken, at this point, almost 500,00o American lives, and many more throughout the globe. Let me say that again: we are trying to survive. That means we are focused on our most basic needs, and this has been thrown into bright relief by the tragedies in Texas brought on by a cold front. When you are focused on your most basic need – to survive – you have to relax about the fact that your self-actualization – at the top of the hierarchy of needs – will have to wait a bit.

Who Gets to Call Themselves a Disabled Writer?

I’m going to tell you a funny story about being disabled, because it sort of encapsulates the way we respond to society’s messages about disability and ability. I was in a wheelchair for the majority of the time between, say, 2007 and 2018. I mean, I could not walk, I could not do stairs. I didn’t have my MS diagnosis back then, so I was going for a variety of therapies – physical therapy, among others. But I never asked my doctor for a handicapped placard for my car. That’s years of being in a wheelchair without every asking for the basic thing that would have made my life much easier doing everyday things, like going to the doctor or the grocery store. And why was that? Because I was loathe to call myself “handicapped.” I did not think of myself as disabled, though anyone looking at me would surely have thought I was. When I was finally hospitalized with overwhelming symptoms of MS – inability to talk, walk, vomiting every day from vertigo, and almost no hand or foot control – I went to the my doctor and asked for a placard. A temporary one, I said. A few months later, I came to the realization that MS was not a temporary problem. My years of falling, accidents, “clumsiness,” had not been random – they had been part of my MS symptoms. Still, I never mentioned MS or my disability in any of my writing. Why not? Maybe because I still didn’t consider myself “disabled enough” to use the name, disabled. Or maybe I didn’t want to accept it would be part of my identity, like walking with a cane or wheelchair, for the rest of my life. I have started to write poems about the subject only in the last couple of years, and I feel very tender about these poems and essays still.

Sandra Beasley, a friend of mine who has several severe food allergies like my own, wrote this essay about claiming her identity as a disabled writer. It’s worth a read. And it made me think of my own nervousness, two AWP’s ago, when I was on a panel and was part of a reading for disabled writers. Was I disabled enough? Could I speak to this group with any authority? Anyway, what does it mean to add “disabled” to your bio, or your descriptions of yourself on social media? If you look at my pictures, you wouldn’t necessarily see any disability, unless you looked closely, or looked at how I cropped out a wheelchair or cane. I notice small things (like my left side never fully recovered from the 2018 MS flare, and I still limp a little on that side, and my eye on that side isn’t quite the same as the one on the right side. Another small thing is I have more trouble reading my poems correctly out loud than I used to. A poetry editor recently asked me to record a video for their site, and asked for a re-recording because I had made minor errors in the words. But I knew that in a re-recording, I was likely to make the same, or worse, errors, because MS makes it difficult for me to read, focus on a camera, and stand at the same time. Did the editor know how bad she made me feel for this neurological anomaly? Probably not. It’s the same with Zoom readings and meetings – I have to shut off my camera sometimes when my brain gets overwhelmed trying to sort noise and imagery and trying to respond properly that that information. It could be perceived as a bad attitude – but really it’s my disability that’s controlling things. During quarantine, I have not asked as much of my body – not trying to walk unfamiliar routes, or dealing with people who don’t know I have MS, or driving to downtown readings that require stairs or doctor’s appointments that take hours of physical endurance to go to. But I still get tired doing things the average person wouldn’t. I have a telltale sign when I’ve done too much that my husband notices – my hands and legs start to tremble fairly aggressively, and this usually means worse symptoms will happen. “Time to rest,” he’ll say, and though I might resist his advice, he’s right. Anyway, I’m telling you all this because it’s hard to be vulnerable and admit your physical, neurological, and mental disabilities. Everyone who has them has a hard time claiming them in a positive way. Do we call ourselves a “disabled person” or a “person with disabilities.” This is an actual thing we have to think about. Disability activists, by the way, are all always tired. They are already pushing themselves to put out the message that access for all is important, that including disabled people in political and artistic venues is important, that their lives still matter even if their legs or brains or ears or eyes don’t work exactly the same way a “normal” person’s do. So be kind when they ask your arts group or association or conference or residency for accommodations – they have already done so much work and they are tired. Disabled people are not trying to make you feel bad or scared or guilty or deal with your feelings about your own mortality/health/human frailty, they are just trying to live their lives in a world that’s fraught with consequences for even mentioning you might be outside the norm.