{bc casual ableism sucks the joy out of everything}

I finished my Master Pass for GO FIGURE, woot woot for me! And now back to the story that I need to have finished by the end of the summer and I feel like I’m not even halfway through yet (I AM, but it still doesn’t feel that way because I started a third story because it was bugging me and I thought just writing one chapter or so would work to get it out of my system. It did not. ::sigh:: ).


And now for a rant – no, not that one. This is a new one:

We don’t often talk about accommodation in our family. My sister JC uses a wheelchair, and when she got her first chair, my father ripped up all the carpet in the downstairs of the house, and tiled it. The pantry is no longer a narrow closet under the stairs but a wide space next to the fridge, with sliding barn doors. Things are at varied heights, and my sister’s closet in her bedroom has been rebuilt lower. None of this is an out-of-the-box solution my parents bought at The Disabled Store (if there’s any such thing, it’s ridiculously, prohibitively, stunningly, SUPER expensive – like her wheelchairs). They just figured out some things, and made them work. It’s a constantly evolving process.

Woodlands 14

We have learned, living with my sister, that casual ableism – subtle discrimination in favor of able-bodied people – is A Thing, really, an insidious thing, that exists. At her private, Christian elementary school, she was carried around like a piece of furniture – or, more realistically, like a fondly disregarded cat or a rag doll, even though she was a child too old to be carried – and honestly, how safe was it for the school to allow other children to carry her? Would they have allowed that with other children? No.

When she was older, she had to go up long inclines to even get to the wheelchair ramp for junior high and high school. The church our family attends was recently updated and modernized – and still lacks some basic ADA accommodation, including a ramp to the platform. Wheelchair users aren’t expected to actually, you know, be among the people giving the service, apparently. The family noted this, and basically accepted it in silence… because, what could we do? We’d asked a few questions to a few people, and gotten chagrined or blank-faced non-answers. Disabled people weren’t in the plans, and the plans would go forward as they were… because casual ableism Is A Thing. (NB: Some people feel we should have made more noise earlier. Probably. It’s hard to overcome conditioning when you’re in the minority twice over, though.)

We almost expect organizations to fail JC, because they do it so often. When she went to beauty school, they put off her enrollment for a solid month because they were working on getting her a special cart at her height, a special chair for her clients, and specialized seating in her classroom basically panicking, honestly. She did get to go to Disneyland, and she got to go first on all the rides, which was A Really Good Experience, but even though they had time and means to prepare, she had to buy her own specialized equipment. Her beauty school sent people to wash her client’s hair for her… because they couldn’t figure out how to make the world work for a disabled stylist, regardless of what they promised when she enrolled.

Being diagnosed with my autoimmune disease gave me more understanding and compassion about casual ableism than I’d previously had. When some days your hands don’t work to open jars in the kitchen, or your wrists and arms can’t carry heavy platters or a cast iron skillet… you have to make adjustments. When you can’t sit comfortably in every chair… you sit in your cushy chairs at home. You wear your mask everywhere, even though you hate it and would like to burn it with the heat of a thousand suns. You re-learn your life in a way that makes you hate yourself less for your shortcomings, you make allowances for the people who make assumptions, and who don’t understand… but you resent it with the heat of those same thousand suns, and those suns go nuclear over your baby sister.

Skyway Drive 132

So, when JC texted us six months ago, excited about attending her first concert at the Shoreline Amphitheater, we wished her eardrums luck, and didn’t think much of it… until she posted on Instagram that the venue was awful. “What happened?” asked. First, no one knew where the disabled parking lot was, and when they finally found it, they wouldn’t let her friends park there, even though they had a placard and a clear need. The parking lot was unpaved and difficult to navigate in a wheelchair. When they finally got in, finally found someone who knew where the ADA accommodating seats were, they discovered they had to go down a flight of eight stairs.

The woman on staff asked, “Can’t you walk down eight stairs?” and rolled her eyes when JC said she could not. And told her friends to “be quiet” when they interrupted to protest her being asked this.

I’m not the nice person in the family; that’s maybe reserved for …somebody else, maybe my parents? What I’d like to do is focus the light of those thousand suns at the Shoreline with a giant magnifying glass… but I’m instead just offering advice as asked, and quietly seething and ranting on blogs instead.

Some people just don’t get a break. They miss most of their senior year in high school because of surgery. They miss out on doing “normal” things with friends because they have to have friends whose cars are big enough for a wheelchair or who don’t mind breaking it down and putting it back together to get it in and out of a vehicle. They end up back on a kidney transplant list less than ten years after the first time. They’re in their twenties before they’re comfortable and confident enough to go to their first concert. It’s not fair, and while howling that into the stratosphere and a quarter won’t even get you a cup of coffee, I just had to say it out loud. With EVERYTHING ELSE horribly wrong in this country and this state and this world this week, this is icing-on-the-top of a bitter casual-ableism muffin of Not Fair, and we are going to do something about it.

Yeah, yeah, something without the sun and a magnifying glass.

Probably.


[email protected]Hobbits in Rivendell

{pf: poetry peeps try to byr a thoddaid}

Poetry Peeps! You’re invited to our challenge in the month of July! Here’s the scoop: We’re each taking an empowering and inimitable line from Maya Angelou’s “And Still I Rise,” and from them creating acrostic poems. Each of those forty+ lines are available to poets to create something memorable – grounding, empowering and expansive – of their own. Are you in? Good! You’ve got a month to craft your creation(s), then share your offering with the rest of us on July 29th in a post and/or on social media with the tag #PoetryPals.


Well, first off, you pronounce it beer ah TOE-thy’d, which won’t really help you write one, but hey, The More You Know.🌠 Second, once you get into the byr a thoddaid form, they’re… complicated? But, not actually HARD. I’ve decided that byr a thoddaid are like …long division. You might run out of attention before you finish all the steps (shout-out to my former students), but it is nothing that you cannot handle (Insert authoritative teacher-voice.).

That being said, let’s acknowledge: this seemed like a LOT of steps.

Mistakes were made. Repeatedly.

My process, when dealing with an unfamiliar form, is usually to read a ton of examples. Are there a ton of examples online that I like? No. Would I need to read them in Welsh or something to find a bunch of great ones? Probably. Did I spend more time faffing about on Google than I ought to have? Definitely. I kept thinking I HAD it, when it turned out I was forgetting the near rhyme and just concentrating on the end rhyme. At one point, I rhymed everything to the first stanza, which …could be done, I guess, but wasn’t one of the options listed. I finally pulled off a tiny one, but like that long division, it took longer than I felt it should have:

The season spills a thousand scents,

As summer twilight, liquescent

Shimmers, igniting dreams undreamt. Such light

Sparkles through stars at night.

So, that felt… like a good start, but then I heard people were making two stanza poems from their stanzas, I felt I ought to step up a bit. Also, it was time to pull out the Canva and make-believe I knew what I was doing…

Full disclosure, these are from my backyard nectarine and plum trees, but one of the loveliest things about this area is the many, many sidewalk fruit trees, and of an evening, you will see families – small children, whole rafts of folks in the national clothing of their home countries – with boxes, bags, little red wagons and step-stools, all out to get stone fruit for jam, for eating out of hand, to dry it, and more. It’s …it makes me feel like SOMETHING is going right in the world. Friends, I will gladly take this one thing.

Want to see the attempts of the peeps who also assayed this adventure? Tricia’s is here. Sara’s is here. Laura got inspired here, and Liz’s link is here. Cousin Mary Lee’s is here. Michelle K.’s poem is here. More Poetry Peeps will be added as the weekend progresses, so check back later for the full round-up.

Meanwhile, Poetry Friday is hosted by Catherine, at Reading to the Core. Thanks, Catherine!


And here it is, the end of a week, when just days – or hours – or months ago, you never thought you’d get here. See how much you’ve done with what you’ve got? Remember — like long division, life is nothing that you cannot handle. Take that deep breath of summer sweet, and hold fast. Happy Weekend.

{new book cover! coming 1/23}

The HarperCollins Children’s Books winter catalog goes live next weekend, so ahead of the rush, I get to show off my next cover! Brittany Jackson is the artist, and Kathy Lam is the designer, and I feel like together they’ve created a cover that’s just — *chef’s kiss* — perfect.

I think I like best the sense of uncertainty in Henri’s eyes. So much of what she wants – to conquer math, to make friends, to get her sister to see her as something other than a total nuisance – seems out of reach. What does it take to make things happen like you want them to? Like everyone else, she’s got to figure it out…

I can’t wait for you to enjoy this book.