Milwaukee back-brace used to treat scoliosis, or curvature of the spine. Photo courtesy of the Smithsonian, National Museum of American History.
That second line was me, age nine, reassuring someone that they shouldn’t assume they couldn’t handle being me, in general, and having to wear a Milwaukee back-brace 23 hours a day, specifically.
The person I was reassuring was the mother of a girl I had been playing with.
Leaving all of the giant red-flagged signs screaming ODD!, BIZARRO!, REALLY WALKING THE LINE OF INAPPROPRIATE! aside — because you don’t need my forensic analysis to conclude that’s a pretty fucking weird conversation — let’s get to what she said next.
After my reply that I had thought was soothing and true, she said:
“Oh I don’t think so.”
Now, you weren’t there with me in the summer of 1975 — and, boy, do I wish my iBrain had had a video feature for capturing these moments growing up — so you’ll have to take my word for how quickly her tone, her facial expression, her posture all shifted from wistful, worried, and leaning toward me to admonishing, pursed up, and pulling away.
I had given her what I thought was a piece of good news: She probably could handle being like me but even if she couldn’t believe that now, that too wasn’t her fault because, geez, I only knew I could handle being me as a result of actually having been me.
But she received it as something other than good news. What, exactly, I’ve never known because at that moment, our time was up and my next appointment — afternoon cartoons — were waiting in the next room for me.
If I could hazard a guess, I’d trace our failure to communicate back to her viewing all of this like-thatness as a series of an unfortunate’s events, compared with my viewing of it as a… person. Me. And that the mostly unarticulated stories in her head — or “narrative” as we Fancy People call it — about disability suddenly lost their formulaic allure, where you know exactly what’s going to happen and how it’s going to end. (A cough; now you know what love really is.) She received my hopeful resistance to that pre-set narrative as a threat rather than at least trying to appreciate the responsibility and opportunity that comes with an authentic choice.
I complicated a simple narrative — being disabled sucks, the end — with one of those endings that isn’t really an ending because you’re not sure if it’s good or bad and who wants that?
A Big Hand for a Little Phrase: In case you can’t tell, I’m a big fan of the term, “like that.” It says so much without bothering with confining specifics. It shares mood, attitude, tone effortlessly; it throws the shade of the mighty sequoia. It’s a two-word, two-syllable judgement, an anorexic haiku of implied dismissal. It’s a portrait in three pencil strokes. It names the tune in two notes. I worship the craft of its economy.
Welcome to the Pre-Resistance
There’s a lot of required pre-gaming, shall we say, when it comes to being a disabled resister even when I’m resisting with the best of my nondisabled sisters. The shift starts early and the labor is…familiar.
Shift-work typically begins in the form of a question; I will please state my answers in the tone of an educator.
It would be great to include disabled people but there’s just nothing in the budget — you understand, right?
There’s a correlation between having money for an expense and the expense being included in the budget, which is why I say: “If you budget for them, they will come,” and why my much-smarter colleague simply says, “Start by allocating 1% of your total budget for disability-related expenses.”
Does anybody understand this note that says if we’re fighting for “choice,” for example, that encompasses action to make parenting viable for people with disabilities?
Yes, I said it. Women with disabilities often have to fight to be parents as hard as they have to fight to choose not to parent.
Since you said our pdf flyer wasn’t accessible to screen-readers so you can’t share it, can you fix it for us?
No, not to be all schoolmarm-y but the only reason I know how to do it is because I did it, as someone required me to.
We do want people with disabilities at our event but can they just bring their own interpreters?
No, informing the public to “bring your own interpreter” is not providing “reasonable accommodation.”
Is it REALLY a big deal for wheelchair users to go in the freight elevator?
Not if everybody’s using the freight elevator.
Could you let our webperson know how the page should be fixed?
Sure, send me an hourly rate offer — unless your organization isn’t paying your web-person.
Do you know any women policy leaders with disabilities who you could invite for us last minute?
I do and it would have been great to have you invite them to speak rather than sit in the audience after you forgot to include them on the invitation list or their issues on the agenda, which purports to be about inclusion.
Captions? For the video storytelling project?
Yes. And I’d like you to imagine what automatic captions might have made of, say, any civil rights speech we now know word-for-word and consider what “good enough” means when it comes to captions.
The accessible bathrooms are a little farther away than the others and you’ll need to raise your hand so someone who has the key can go with you, ok?
As long as everybody here who needs to use a bathroom has to raise their hand and be escorted, it sounds ok to me.
UPSIDE: I know the answers to these questions very well. And, yes, you can predict that your shift will begin with a question about money and end with a question about using the toilet.
DOWNSIDE: I’ve been getting the same type of questions since 1995-ish. The questions below were mostly from 2016 and were from progressive allies. So…yeah.
It was a lot easier to be excited and enthusiastic about answering these kinds of questions, about feeling the genuine good will of other progressives, until maybe 10-15 years in when the people had been coming and going — all with good will and intentions — but the questions remained largely the same.
Of course it is different now than it was when I was almost 35 before I ever met a woman who, like me, had muscular dystrophy and was working in grassroots women’s health. Barbara Waxman Fiduccia was just the prickly, sardonic activist I needed as a later-in-life role model.
Today, I’m not cynical, exactly, but I’m skeptical that the best storytelling and the best education will stick any better than it ever has. I think people — adult people — learn by doing and people don’t change what they’re doing until they’re forced to. Enter the power of impact litigation and tough regulations to preserve, codify, and apply all that wonderful education and storytelling, or else that terrific disability narrative of mine will read as a fantasy about a better world that’s never going to be our own.
But Back to Bioethics and Choice: I Had an Abortion
When I was 27 in 1992, I had an abortion. (I recounted it in the 2005 documentary titled — wait for it — I Had An Abortion.) Because I lived in San Francisco and had $325, it was a legal, safe, and undramatic medical procedure. The only thing less traumatic than the actual event was the decision to have it.
One of the consequences was that I slowly recognized that, unlike my friends who were girls, I couldn’t recall anyone ever asking me when I was planning to have children. My mom had probably mentioned the idea in passing but there were no actual conversations about the details, like when we had talked colleges. A pediatric neurologist encouraged me when I said, at 12, that I wanted to be a civil rights lawyer; I could feel the relief in the exam room that I would have a way “to take care of myself” despite having muscular dystrophy. Parenting? Carrying a child? Never came up.
The first time I remember connecting my own self with motherhood was when a nurse practitioner at the Women’s Needs Center (WNC), a part of the Haight Ashbury Free Clinics, told me, as if it were the most ordinary thing in the world, that I’d need to gain at least 20 lbs before I’d have a healthy pregnancy. I assured her there were no plans afoot, continued using condoms — including an expired one, as it turned out — and one day there I was, scheduling an abortion with the private physician on the WNC referral list.
There were many reasons why I had an abortion but a fear of passing on a congenital disability wasn’t one of them.
It’s very easy easy for people to forget when they’re casually saying to me that someone’s pregnancy was terminated — of course — because of an abnormality, that it’s like they’re casually remarking what a shitty country I come from. My body is my home. My body is my country. My body is not a place I want to flee. I am not at war with my body. I do not want to be exiled from it.
I could be its president but I’m still the President of Shitsylvania. I get it — parts of my country suck. But it’s my country. I don’t think
papering over rebranding Shitsylvania as Normylvania will change any of the painful — but authentic — feelings about our country.
You think I would choose not to be my country’s child. That I would never want my child to be born there. But I was born there, I grew up there, all of my shitty toys, shitty photos, shitty memories are from there.
And yet you expect — of course — that I would deny it. I could, I might. But again, it is the of-course-ness that offends. If I say something to that effect, I get a question: “Well, don’t all parents want their kids’ lives to be less shitty?” and my reply is along the lines of: “No. Which really is shitty and, like most shitty things, has nothing to do with muscular dystrophy. Try working on the cure for shitty parents.”
The above confuses anti-choicers. They think that because I have a congenital condition that tends to open discussions about ending a pregnancy, I must want to deny other women the right to choose whether to abort when a disability is involved. Because nothing sets an extra-vulnerable infant up for top-notch, or even minimally acceptable, parenting like coercion and deep, deep despair. OH YES LET’S. I suppose I shouldn’t be surprised that anyone — and that includes you, disabled people — who thinks female bodies are husks would see a disabled infant as a teaching tool. I’m not a mother or a Bioethical Expert or nothin’ but I’m pretty sure getting some lady to “accept disability” would go better if you weren’t violating her in the process.
Step 3: I Persist — With Assistance
Persistence looks really attractive in hindsight. In the moment of the persisting, it looked much more like being a damn fool, a damn fool who’s stubborn, and a damn fool who’s stubborn with a side of maybe not quite bright. And perhaps not even truly persistent as much as being out of other options so best just to keep going on the path before me. Habit, even when frustrating, is better than the unknown. So you — I — just keep going and one day Someone names you as a persister, as if that is an accomplishment.
You will have noticed that the novel remains unfinished, I’m not a civil rights attorney, and I never did have a child.
All three choices came down to capacity and limitations, and the choice to view what is possible as good enough. I have a significant disability; insisting it doesn’t stop me from doing things is an emotional game I won’t play with myself. I have always had to work full-time to ensure I had health insurance, rent, etc. I don’t come from money and it’s only since I married in 2011 that I have a stable economic status. That makes me the upper-crust of disabled people. As I pointed out recently in a discussion about questions for a webinar about bioethics and Human Gene Engineering (HGE) technology, having choices at all and expecting to have them are advantages themselves.
Because I have access to employment, I have less energy to write fiction; the trade-off is that my nonfiction writing and other paying work contributes to our political betterment. To have that is itself an honor.
I’m not a civil rights lawyer, in part because I had an undiagnosed case of respiratory failure and sleep apnea during college — my grades sucked. The trade off is [INSERT LAWYER JOKE HERE].
I did get a couple of kids, sort of. The best kind — grown up but not TOO adult. They’re my wonderful husband’s wonderful children. Added to my family, I have no excuse not to persist.