Category: Mi Familia Loca

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.

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.

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.

x-posted@Hobbits in Rivendell

Madea, my maternal grandmother, had a great love for… Chuck Norris. Clint Eastwood. Tough guy movies and violent Westerns. A bit unique for an elderly Black woman who only ever read the Bible and did the Jumbles crossword, but there you go – Madea spent a lot of time with the Old Testament God, I guess.

The only time the two of them were at ease in each other’s company was when my Dad would watch “cowboy pictures” with Madea. Sunday afternoons, it was black-and-white movies and 70’s adventure dramas, and once, memorably, Eastwood’s iconic Two Mules for Sister Sara,” starring the inimitable Shirley MacLaine.
Now I know the film to be some improbable tale of a nun falling in love with a violent cowboy who rescues her (unrealistic, with a heavy dose of Stockholm syndrome), but when I first saw the film, the most memorable thing to me was Sister Sara’s eyelashes. Boy, I COVETED Shirley MacLaine’s lashes, and it wasn’t until later that my naive little brain realized those were – duh! – falsies, probably the fancy ones made out of mink. (Boy, what a testament of different people having wildly, vastly different experiences! I wonder what my father and Madea saw in that film…) Sister Sara’s are to this day my peak aspirational lash goals. We don’t always get to chose our, um, fashion icons, but today I’m feeling affectionate gratitude for Miss Shirley – past lives or no – who is still one stylish dame.

the MacLaine effect on eleven-year-old me

a butterfly’s wings
meteorologists said,
could cause a windstorm.
someday, i’ll have that power
simply by batting my eyes.

Today, I am grateful for my youngest sibs, my nieces and nephews, who, like my students, gave me a shadow of the experience of parenting: watching someone grow past the expectations everyone has had for them. My niece just received a richly-deserved promotion to a senior supervisory position. After the dysfunctional family-owned business, where her boss’s mother routinely screamed at her boss over design decisions, after the boss who asked her out, repeatedly, and hung over her desk and stared when she wouldn’t date him, her current job, where she’s seen, valued, and appreciated must be a relief. It’s been a long, grueling march – but her end goal is finally in sight.

the long game

moving the tassel
signals commencement. we cry,
the future is now!
more truthful: futures exist
endurance is the new “now”

I never expected to be an older sister.

I spent long years being the youngest, a position loathed but familiar, before finally getting two younger sibs in one go, but little did I know that they meant my own position would change to that of Big Sister. This meant explanation, exhortation and most often, commiseration. And so it was that when my phone rang on Friday and my younger sister said, “Something’s happened,” and her voice warbled up in that tearful fashion to which I have become accustomed. I got comfortable, expecting the usual – a spat between she and Dad, or our eldest sister. Not today.

It was, she told me, at school, where she, with her cohort, are learning the ins and outs of the world of hair. JC keeps me up to date on the restless world of the Young and the Black-Clad, as all good Paul Mitchell-ites must be, and there is always some drama – so-and-so up and walked away from a client of hers and just left her hanging, so-and-so did a bad cut that the teacher had to rescue; so-and-so is the best colorist in the whole group, and is a little too proud of that fact. JC is a deft hand with the color bowl, and moved beyond doing wash-and-sets on the disembodied head of Maria the Mannequin to real human clients a little less than a month ago. Friday’s client was in for a color… and then abruptly took over the discussion on hair with a personal question.

“Why are you in a wheelchair?”

JC was the only physically disabled kid in her entire school, so she’s well accustomed to discussing her disability, and not at all uncomfortable with a quick explanation. However, the client wasn’t… satisfied with quick. She asked probing questions, and kept turning the conversation from the general to the personal. When she was finally draped and settled in her chair, and JC went to get her color, the woman asked the room at large, “Why do I have to have her? Can’t someone else do my hair?”

I imagine the room was uncomfortably silent. Afterward, the woman became uncommunicative and surly in response to questions and overall was a difficult client. JC’s confidence wavered, and she called in her teacher to finish for her… then a friend told her what had been said.

I commiserated, of course. I said how sorry I was that something like this had happened. I expressed my disgust with the woman’s ignorance, and her apparent belief that disability is contagious; I wished aloud she had received some home training. But, none of that fixes anything; in the long run, nobody can fix people. And, because I am so very bad at commiseration, I said, “And what’s your plan for the next time this happens?”

“What?” she quavered.

“It’s going to happen again,” I said, trying to be gentle. “Humanity is consistently awful.”

To no one’s surprise, she hung up a few minutes later, saying she was going to call Mom.

It was… maybe? the wrong thing to say? My sister, who was born with such birth trauma and such horrific birth parents and who manages with physical disabilities is still a mostly sunny-side-up type of kid. While I assume that there are going to be people in the world who are just generally ugly about things, she is horrified to find them. While she rolls through life assuming that doors will open for her, I trudge around with an axe. If it came down to wondering which of us was right the greater majority of the time, I’d probably say me… and she’d probably say her. Some sisterhoods are all things sweet and comfortable. Some sisterhoods have traveling pants. Ours, unfortunately, seems to have a cynical wedgie.

I guess this explains why I’m not actually great at this gig.

Regardless, I still think she needs to make a plan for next time. Because, in my experience, people will try you. We all know some folk move through the world looking for power exchanges, those moments when they feel like they can level up from the ground-floor misery that they feel they are by clomping on the head and shoulders of someone else to rise, even briefly. Everyone with a minus in a world that counts only pluses needs to have the tools at hand to lay boundaries for the way they wish to be treated and with kindness, insist on it. The Golden Rule isn’t meant to be a yardstick with which we smack each others’ hands, but a yardstick by which we measure how much we, too, are worth, and look toward treating others in kind. I want JC to know she’s worth being treated better, worth more than someone who has to explain or defend her choices or her existence.

Until then, Sister Cynic is practicing her shin kicking, in case Little Sister might need her.