In Which Life Intervenes, and My Post Improves...

I was all set to write one of my usual barn-burners about the valedictorian in New Jersey whose internship threatened her personal care but my life got in the way for some reason that seemed important at the time but is not exciting enough to list here.
(Anyone else feel that there is too much going on to know what to do, pretty much always?)Longtime readers of my work may remember I faced a similar dilemma coming out of college and always felt vaguely cowardly about the not-handling-it way I handled it.Long story short, I preemptively took myself out of the running to save on the drama, and now, when I feel like a do-nothing in the middle of the night, that choice kind of looms as the point where Everything Went Wrong, and I would spare anyone that, but I definitely don't think pretty valedictorians deserve it, although Donald Trump junior might.
 So, when I couldn't write the blog post either, in what seemed like a timely fashion, I felt badly again.Until I got the news a few hours later that aSenatorial candidate, influenced by the local coverage I linked to here, as well as a meeting with the family, is actually running on eliminating caps and disincentives for Medicaid. Exciting news for crips of all stripes, even Bohemian ones who've given up on being active participants in politicians' minds.
It gets better, too. The candidate, Lisa McCormick, has agreed to do an interview with me for this blog shortly...anyone have any thoughts on questions?  Especially NJ folks... I'm excited about this.
It still burns me that disabled people get barred from accomplishing things AND blamed for being on benefits so I'm happy to use my skills to promote real solutions.

I Learned Something: The Fries Disability Representation Test...

Coined by poet and author Kenny Fries, the deceptively simple test asks us to name a work with more  the one disabled person in it, in which they have conversations that don't relate to cures.(It is sad how little writing I can think of comes close to this test.A longer version of the test is availablehere as well as why this test still matters when we face so many great threats. Off the top of my head, I can only think of The Other Side of The Mountain and its sequel, Jesus' Son, by Denis Johnson, and Nick Flynn's memoir "Another Bullshit Night In Suck City"(one of my favorite titles, ever, btw.)
Considering I've been reading for forty years, I hope there are more that just kind of slipped my memory, since I only just learned about the test, but it probably wouldn't have occurred to me to beat my breast  about this as a young person since I wasn't very comfortable in environments with many disabled people.  Being the "only crip in the room" felt like more of a distinction than an injustice so it would not have occurred to me to notice that pop culture thought so, too.

I've discovered solidarity more with midlife, as well as a gradual realization that life offers few gold stars, and no A+., and since I'm not getting money, power, or women like Scarface, I need another measuring stick.
Does your favorite bit of crip culture pass the test? Let me know in the comments.

This Post About The Candidate In OK...

was going to be very different, before I looked into Scott Barnett, and found him fifth in a field of five Republicans looking to be governor of his once-great, now often a punchline, state(I live in one myself, Oklahomans, I understand.)

I considered not writing about this at all, because he's not going to be  governor(or even, as he wrote on his Facebook page "Mayor of Oklahoma", and what do I expect from such a place, anyway?

 My answer is more. More than comments aboutnot feeding people who can't survive without foodstamps. People pick on the poor and disabled though because they expect us not to talk back, though, in a new twist in the old song about this getting out for politically-motivated reasons, Barnett's blaming  Facebook and hackers.(Even if someone's page does get hacked, that excuse is such a refuge of the being-lame-and-busted, I doubt I'll believe it again.) It's appalling that even the OKGOP can't be bothered to denounce these hateful comments. Yes, it's a desperate grab for attention, but every time things like this go unanswered , they get that much closer to being acceptable.

Nobody Should Lose Her Freedom To Get Personal Care...

Keep being disquieted(when not downright petrified) by stories like this one out of Minnesota where people with disabilities are forced into nursing homes in their primes because caregiving jobs  pay lousy wages and it can be argued that working food service is easier, or, well, at least less responsible.

I am one accident away from this myself, and while it can be bracing sometimes to live as though there is no tomorrow, I would much rather feel that as a metaphor than as my literal truth in my mid-forties
. Although nobody's work is particularly valued in today's America, the lack of respect and pay accorded to caregiving reflect a lack of concern both for people getting the care and for the largely female workforce that provides the care..America needs to decide we are all valuable. Incidentally, institutionalization does not actually save any money as the medicalized settings can cost many times what attendant services with a less medical component does.

.I know that my mom has been treated as...somewhat less than loving at times when there is a problem with her attendant paycheck and she fights to fix it, for example.  I guess we should be able to buy things with Labor of Love coupons or something, but strangely,  our tight relationship does nothing on the bill-paying front, especially since my mother would never allow me to put a webcam in here(rimshot)I think her fighting for what she is owed shows a real commitment, not just to our family, which I'd never question, but to also make sure her brand of "Women's work" is not invisible and underpaid.

Natural Causes by Barbara Ehrenreich

Although the right to, you know, go quietly with minimal fuss may be the one right disabled people like me would never have to fight for(see also, Alan Grayson’s “Die Quickly,” comments, which, bald as they seemed to me at the time, might have actually underplayed GOP hostility to the “least of these.) I find there is a lot to like about Barbara Ehrenreich’s latest book”. It is getting pounded in Amazon reviews by people as seeming to suggest that caring for one’s health doesn’t matter, or worse, that people past a certain age should find one of the few intact ice floes and settle down on it.

I do think that the 70-year-old Ehrenreich has made peace with her own demise, although I don’t think she is going anywhere that soon, but I think her real goal is, as always to get us to question our own assumptions about why we do what we do.(In some ways, I wonder if the vast division of reviews for this book isn’t between those of us who have a more established awareness of the limitations of medical care, and those looking for the latest superfood to prolong an already comfortable path in life. I think I know, but I’m not getting too attached to that assumption either.

 Given that my congenital disability being untreatable, and largely unfathomable by most doctors(“That affects children, doesn’t it?” is a not uncommon response, even though growing up affects children too) does lead to a great deal of skepticism, I was surprised at how little trial-and-error research that some of the most common medical testing has.