A Disabled Case for "Dying For Sex"

 

At the beginning of Dying for Sex on Hulu, I told myself I didn’t know what Molly was missing.  I should have been more sympathetic.    Even though I’m not currently dying, I’ve missed a lot sexually as well and have a fair amount of lost time to account for, but watching Molly turn down what people like me are taught to want, Ie, a man that can “handle” all of our appointments and caregiving tasks (Maybe he was just a little too into it, actually), and turn it down, was hard for me. I didn’t get it (or didn’t I? I did pass up a very sweet disabled partner once because “we were in different places” (usually, literally, which to be fair to both of us, probably did more to put pressure on the relationship than any sense of missing storybook passion.) But, although the sweet memories made me torment myself for years about letting him go-, especially since I didn’t have the options of even a dying Michelle Williams and her radiant O-face, I knew it was probably best not to uproot my whole life to start out where it takes couples years to shift into. The pain and loss were compounded when it seemed like the education I chose instead, and indeed, much of my whole lifestyle here, seemed like a bad investment.

 (Even though I’m over this loss and missing him, in more than an abstract way, I’m still sad I can’t say that either I got a do-over or that choosing me went great.) Maybe the optimists among my readers-all six who are left-might want to think the Universe has a long timetable and I haven’t completely screwed up yet(I probably did, though.  Don’t think there’s another dimension where I’m a futures trader.)

Even though I liked the movie a lot, especially for Jenny Slade as free-spirited bestie-turned- attendant Nikki Boyer, I did have some quibbles, as a disabled viewer. First, the way they structured the episodes did sort of make it seem that Molly was always ready to go in a way that strains the credulity of anyone with even the mildest chronic condition.  Also, she always looks like a poem. (Although, yeah, it’s “Dying for Sex” not “What’s It Like to Die”, but still…dude, it’s probably not like that very often.) Kind of felt sorry for her hubs, too…how many times did she lie? 

 “Oh, that was great, baby! You’re the best I ever…” (Although he was insufferable enough to think that without much prompting and probably bought special “Music for The Patient’s Yoni” tapes.) But it’s a sad thought amid all the awakenings that we cheer on. Also, I only wish America (to say nothing of our health-care system itself, which could be a separate post for the zillions of petty tortures it inflicts on us) could tell us:

 
“Yes, halt and lame and huddled masses…joy and pleasure should be yours.” 

I only wish everyone could do that. In real life, I think I’m only guaranteed an offer of a trip to Disney World—a lot of my classmates were Make A Wish kids when we were young enough that I was jealous. Didn’t really understand the real ride they were undertaking, nor how often surviving  might leave me still feeling jealous from time to time.

 As for sex-positive social workers, yeah, sometimes I’d settle for one that, when she told me she had two kids, didn’t make me think “How?” right. Suffice to say, we don’t talk about kinks. I think one time I suggested to one of the nicer ones, about twenty years ago, that it was hard for me to make a first impression without hearing about Grandma’s operation and she looked over her glasses at me and said “Why?” so I just can’t imagine all that support.

Review--What Does It Feel LIke? By Sophie Kinsella

 

Your Bohemian Crip is a huge fan of Sophie Kinsella’s work.  Honestly, this is one time I’d pass up the Thrill of Representation to know that somebody whose work cheered me up so much just…went on to have a long happy life that we helped pay for. I gladly would, as her work has cheered me up and enlivened waiting rooms for me many times.  As if there were some kinds of Congress of Happiness, only somewhat effective.

But I doubt that such a body would deliver satisfaction for everyone any more than actual Congress. But I wish, in addition to my million other wishes. (It’s difficult blogging when the news cycle is nonstop crisis—makes me feel that I’ve been writing this post for years, not weeks, it should be noted)

Kinsella’s latest work, the novella “What Does It Feel Like?” traces the diagnosis and treatment of women’s-fiction novelist, Eve, married to her college sweetheart, who switched styles mid-career and succeeds in ways that match her wildest dreams by taking her own advice and “writing the book you want to read”. From there there’s the occasional bit of glamour, but Eve settles in to raising her kids and trying hard to get a book out every year or two.  Until she starts losing her balance and forgetting things.

(Which is sadder for her family, even as it’s darkly funny that she forgets that’s what happened from time to time).

 Eve-Sophie-Madeline has a brain tumor, glioblastoma, which makes the creation of this book into a real accomplishment over and above the way she usually writes with humor, heart, and a knack for letting girlie thinking save the day.  Following surgery to remove the tumor (I think? Not altogether clear on the medical part, only partially due to the novel being told in snippets) but I know she did a lot of rehabs, and that Brits call walkers Zimmer frames. I looked it up, hoping Mr.  Zimmer had a magic elfin hollow tree or something fascinating, but a company named Zimmer developed the first versions of the walking aid at the beginning of the last century.

Sometimes we read fiction because real life isn’t compelling. Sometimes because it’s mean.

Sidelined For #No Kings...

 I'm sure this isn't good yet, but posting it anyway:

 

Sidelined

Headed into my millionth last stand

Heart and mouse in my hand.

If I could, I'd immolate today.

Let capitalism throw my trash away.

Too damn stubborn to quit now.

Although there is some inconsistency-my initial word wasn't the right choice

in fighting for democracy,

when I'm not free.

But in the course of human events,

this evil regime makes no fucking sense.

So I plant trees

I'll never sit in the shade of.  

My Response To Joni Ernst...

 

Joni Ernst, It’s Also About Meaning

There is a part of me that got the A’s and all that, and fell upon The West Wing after the fact that has all this respect and still wants to call you Senator Ernst out of respect for the office and, blah, blah, citizenship-cakes, but I think you forfeited that right when you “invited” people who are struggling to die for your priorities and advancement. Thanks to Gary Legum at Wonkette for the documentation here(This, in case you’re not aware is not what Jesus would do. A lot of you guys…get confused about that.) So, hey, Joni, what’s up? We’re not all your pigs.

It's not about some guarantee where we all get a hundred years, tax-free, all right, and it’s not about people not being willing to make sacrifices, although, even not being from Iowa, I’m pretty sure nobody poor wants to sacrifice their “inalienable rights” to life, liberty, and the pursuit of happiness so that you can get even more powerful and be a bigger hose beast than you are. That does not count as the greater good where I come from. If we have to sacrifice or tighten our belts, it should be about things that matter to *us*, but there’s enough that we shouldn’t have to, much—people at the top are really greedy-- not so our rich overlords can take private jets off their taxes (private jets must kill your soul faster than crack cocaine…maybe I’m lucky my disability and relative lack of resources keeps me off of one, at that.) You are allegedly a public servant, although admittedly the duties of such a role have shifted in our second term as #AssholeNation…in many ways, you are the only voice those people you—heckled (how hilarious!) have.  They turned to you to serve them, and not only are you failing them, and proud about doing so, you mocked them for expecting otherwise. A disgrace to a disgraceful profession.

Nobody knows how long they have on this planet, it’s true, which is why I hate the times I spend yelling at people like you and foraging for the crumbs that count as our safety net in a country of unparalleled resources. I’d like to find more time for creativity, fun, and enjoyment instead of low-level scurrying to try to fix what people like you break. You (and your crew) make me sick and I want to tie this response around your necks for the rest of your lives.

Taking you down with me,

The Bohemian Crip

can you afford a donation to JD Scholten? 

He's running to defeat Ms. Ernst. 

Tom Sullivan Appreciation Post....

 It would be wild if this came up in his Google Alerts one day. Maybe we'll talk online sometime--now that I know he's still among the living and he knows I'm a fan, well, stranger things have happened.

 I bet I’m not the only Crip of A Certain Age  who spent at least some Wednesday nights of her childhood soaking in America’s ambivalence about disability by watching “Highway To Heaven” sometimes…it was kind of threadbare representation, but for many years, as close as I got.I kind of envied those televised crips in equal parts, both for getting to explode in anger about their disabilities, and that they only wanted to do it in one, dramatic burst. There might be a lot more I might say about HTH if Everything wasn’t so nuts, but it’s all sentimental cliches anyway.

One of the best things about the show though is blind actor, writer, and representational one-man band Tom Sullivan who was the best thing about a lot of Very Special Episodes when I was growing up.  My brother and I shared an obsession with watching “If You Could See What I Hear,” especially the part where Tom drives his college friends home because he was sober when they weren’t.--HBO was different before the whole Golden Age thing started up--they showed the same things, but I don't think they were in the local TV Guide a lot, so to see your movie all the way through could take a few tries, anyway, butIf You Could See What I Hear held up to frequent rewatch.  (The movie is online, but I'm not sure what the rules are...don't want to get people in trouble.

 

They See Me Rolling, They Hatin'

 and, well, people are passing me up right now, so, just in case:

I have cerebral palsy, use a wheelchair, and I’m on AHCCCS (Medicaid in some places) to pay my attendants. Needing so much support for so many years (I’m fifty-one, on benefits for about thirty years) wasn’t really part of my plan. But I still deserve to live (; I bet surviving would feel better to me if I didn’t fee punished, periodically, by budget cuts, austerity, and inaccessibility. Not that my spirits are really the government’s problem, I suppose, but in their place, I hope I’d not choose to cause pain and disruption to people I never even knew. Everybody Poops, after all) I have a family, friendships and community that I contribute to, despite the ways that it’s uncounted by the Gross Domestic Product., which massively undercounts women’s work in general, by the way I believe that some things are necessities that it’s inhumane to make people fight for, or at the very least, struggle with paperwork to make it look like they’re doing something but really just creates frustrating and costly hurdles for people trying to meet their most elemental needs, without a lot of advantages. Some people may not have family networks that they can lean on—I do, but we never know how long all of that might last. Paperwork may pretend to offer a guarantee, but real life does not. The United States is the richest society that has EVER existed; does taking food aid away in the budget bill make sense? I say no, even if I haven’t gotten SNAP since college.  Sometimes it’s about our neighbors, not just usI