I’m FEDup with feeling like my feelings aren’t really essential components of conversations about bioethics.
About a year ago, in the midst of a cross-disability Human Genetic Engineering webinar that I was a support staff person for, one (not all) of the panelists named several disabilities, some congenital, as examples where you’d want HGE to be available. One of the conditions named was muscular dystrophy, the umbrella term that my own unnamed disorder falls under. I took the panelist’s choice to name each to mean that they were conditions that are particularly undesirable. There was a vague mention of parents opting out of children who have these specific conditions. (I’m in favor of enthusiastic consent for all parenting, including the parenting of disabled children. It’s the singling out of only certain children that needs to be addressed very carefully.)
I had some feelings about that, which I have since translated into the image of the tear-down in the gentrifying neighborhood. I explained my feelings in the Q&A – though I didn’t have questions, really — and then I felt afterwards like I’d made it weird. It was a murky boundary thing; if the panelist had mentioned his own disability rather than mine, I might have disagreed but I wouldn’t have had such an emotional reaction.
It may not be a terribly marketable skill but exploring and describing the emotional landscape of being my particular type of disabled person is what I know how to do, though I usually think fiction — #criplit, specifically — is better suited to the task than anything expository. There is emotional terrain in the development of bioethical and other disability policy, law, and research — as there is in the policy, the legal analyses, the studies, and all of the work-product items — and it deserves representation. That’s what I’m trying to do here.
I can do it because of privilege: I’m white, have a college degree, and the time/money to write this; this all adds up to a baseline expectation that the world will agree my feelings matter. I also grew up in a family that, however messed up, was an oasis from ableist BS and — most importantly — treated my feelings as valuable and in need of care.
But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied.
One of the webinar folks sought me out at another event subsequently and was kind enough to say that my comment had value. But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied. I was simply not prepared to get hauled into a disability justice-branded webinar as Disaster Exhibit A while I was sitting at my DREDF desk.
If I could respond to the panelist, here’s what I’d say: “To be very clear: Difference in emotional reactions is a good thing, I’m not pleading for conformity here. But I have a problem when feelings aren’t identified as such. I get it — muscular dystrophy is frightening or repugnant or whatever to you. Some folks with MD hate it. But it’s not a given. It’s a feeling. And you presented your feeling as a fact. You’re regarded as a bioethics expert, plus you’re disabled yourself. That’s why you harrowed up my feelings so deeply.”
If You Don’t Care for Satire, Beware of This Greek Director Filming Rabbits
The Verdict: The Favourite is full of shitty people, shitty behavior, and shit. It is a magnificent film about that most favored form of disability: crippling whilst posh. It centers a disabled woman fucking and then fucks with your head about disabled women fucking. So. It’s complex. It portrays a disabled woman being sexual and a jackhole. Also: I laughed. A lot.
(The 18th Century; The Court of Queen Anne But Not Really) If you took Tony Richardson’s Tom Jones, and Kubrick’s Dr. Strangelove, shoved them into Watership Down with any of John Waters’s pre-Hairspray films, the surviving film that hopped out might be Yorgos Lanthimos’ The Favourite.
Christ on a cracker, the FuckAbility™ Research Council hates being serious but needs must on the issue of casting and representation. Olivia Colman has a disability history that is, in fact, relevant to her role in The Favourite. Ruling that she’s not disabled enough, or has the wrong disabilities to qualify her for the role, reduces us to our diagnoses — something we have long fought against.
Bawdy without any ameliorating jolliness, The Favourite has an essential meatiness that’s mostly missing from the lives of bodies on the mainstream screen, including physically disabled, ill, or aging bodies. It got to me. The night after I watched it, I had a dream that I went to use the toilet and found I had shit smeared all under my clothes. When I woke up I knew it was because the reeking sensibility of The Favourite had made a powerful impression on me.
By the time I was ten in early 1976, my father finally found a job he seemed likely to keep and we settled into our second tiny Connecticut town. I’d been to three public schools during fifth grade and was wearing the Milwaukee back-brace 23 hours a day.
I’d started being seen in 1975 in the pediatric neurology clinic at Newington Children’s Hospital, up by Hartford. (It had been formerly known by the delightful names Newington Home and Hospital for Crippled Children, as well as The Newington Home for Incurables.) Dr. Russman and Dr. Drennan, my neurologist and orthopedist, respectively, questioned my diagnosis of cerebral palsy atypical but continued the familiar routine of x-rays and exams every 3 months to monitor my always-worsening scoliosis.
After growing the tissue from two nerve and muscle biopsies taken from my upper arm and calf (an experience that included my first overnight in a hospital, my first pre-procedure Valium, and hearing the words, “Skin stretcher, please,” uttered in connection to my own personal calf), they scheduled an appointment for the verdict. I was interested in a detached way; I was comfortable with not really being one thing or the other, medically.
I’m FEDup with “debates” about my sexuality, my reproductive choices, my existence. There is so much to love about social media and one of those reasons is the experience of going on Twitter to
quickly check my popularity see what I can do to better the world and finding an objective discussion underway regarding whether someone like me should be “allowed” to reproduce. The person who asked the question may not even understand that, by placing my reproductive choices and existence within the frame of public approval, they’ve reinforced bias against me, a woman with a congenital disability who lives “like that.” Check out another guy who asks rational questions just like you did.
I’m not answering on Twitter because — unlike when I was in my 20s, 30s, 40’s — I no longer feel required to justify my existence just because somebody decided to have an “objective” “discussion” about whether I’m really worth the hassle.
Yup, even when your purpose is ostensibly positive, how you frame the conversation matters. Growing up with muscular dystrophy means I’ve heard more times than you can imagine that my particular disability places me — of course! — on The List of Lives That Suck. What’s newer or less personal to you is very different to me as a woman with a congenital disability. So here’s an excerpt from a longer past post that elucidates where I’m coming from. Continue reading
I don’t ordinarily post memoir pieces but I have written a lot of first-person material as writing exercises. I’m posting one such piece now to share a little bit about being a very young disabled child.
Because my memories go back to the age of three and no farther, it seems as if I came into existence as I was (just barely) walking with my mother, and occasionally my father, through the long hallways of Rochester’s Strong Memorial Hospital around 1969.
In the confusion about what was wrong with me — cerebral palsy atypical was their best guess and a misdiagnosis until I was 11 — it must have been a strange relief to the neurologists and orthopedists to come upon scoliosis, a particular problem, discrete and treatable.
RJ Mitte Will Present at the 2019 Palme d’Visage Awards, Signaling That The Upside Will Win Most Condescending
Matt Damon, Master of Diversity, Hails RJ Mitte’s Commitment to Avoiding Discussion About The Upside‘s Discriminatory Casting Practices and His Unstinting Support for the Status Quo That Blocks Disabled Actors From Competing for Roles
(Battlecreek, MI) NoVariety announced today that RJ Mitte will present the inaugural “RJ Mitte Award for Most Half-Assed Casting in a Film Depicting a Disabled Character.” Emma Stone will portray RJ Mitte at the March awards ceremony in beautiful downtown Switzerland now that Jennifer Lawrence, who had been a lock, became uncastable after a recent injury left her with difficulty walking.
“I can’t imagine a situation where I’d tell Bryan — who’s been like a father to me — that, while I know he cares about me and wants to help me, I can’t let him use that as an excuse for a business decision that hurts others.”
Mitte has been vocal on social media about his support of Bryan Cranston’s casting in The Upside. “Disability stories need to be told and films like this wouldn’t be made without a star like Bryan Cranston. Conflicting messages about inclusion that reach as many people as we can are how we change mindsets and remove the stigmas around disabilities. As a disabled actor, I am proud of his performance in The Upside and I can’t wait to see Emma Stone’s portrayal of me presenting him with the award.” Continue reading
Issue No. 4: The It’s Not Just That You Used a Slur, It’s That You Doubled-Down on Your Offensive Language Edition
In which The Crip responds to
a Daily Kos writer’s post and subsequent comments America’s Next Top Jackhole, Louis CK, who ordinarily one would have thought came from was Republican author, given the writer’s intransigence to making a change that was so easy, obvious, and respectful. would shut the fuck up, in general, and definitely about disabled people, in particular.
The Top 5 Reasons Why Everyone (Me) Knows You Never Use the R-Word in a Careless and Lazy Fashion and Also Just Don’t Use It
1. Presumably, you want people to respond to the actual topic of your article, which you’ll notice I’m not doing.
Going to see The Upside?
Don’t miss an opportunity to share your feelings about the film’s bold casting decisions. #CastBoldly
Print the graphic above and hand it out at the theater!
Sample messages for sharing your excitement:
“I haven’t seen such bold half-assed casting like this since last year’s Palme d’Visage winner gave us A Pair of Raybans as the lead in Blind: Based on a Mall Store Called The Sun-Glass Hut by The Food Court.”
“Do you think Streep could do what The Wheelchair did: Cradle Cranston’s ass while wordlessly conveying every stereotypical cliche about living with a disability? I scoff at that!”
“Matt Damon said it was okay!”
See you in beautiful downtown Switzerland in March for the Palme d’Visage Awards!
FuckAbility™ Research Council (FARC) is a piece of letterhead housed on the Tales From the Crip website. FARC’s mission is to raise awareness of hollywood’s lack of awareness that many disabled adults fuck in groups of one or more. All views expressed are subject to change and denial.
The inconvenient truth about The Upside is that its misguided casting is based in a biased business decision, not creative expression.
As in Me Before You, Breathe, and He Won’t Get Far on Foot, The Upside failed to cast a wheelchair-using actor and instead chose Bryan Cranston, who does not have a visible disability. Admittedly, I hadn’t expected Cranston to have actually been “the one who knocks” in his own life when he played the role of a drug dealer. But I am critical of him deciding to take the role of a recently disabled man — and, more importantly, I’m critical of how systems protected him from having to face serious competition from wheelchair-using actors. He recently defended his choice, saying it was a “business decision.”
Many disabled people disagree. Cranston, and many others, scoff at the criticism, saying that movies are a commercial venture and that, moreover, disability is just another fictional experience to portray. Actors act, after all…unless the actor has a visible disability, in which case their talent could never sway an audience — or a producer.
Muddling these arguments together is a mistake. The first is about business practices and the second is about creative expression. For actors, creative expression requires industry access — and that’s why casting norms need to change before debates about representation and creative expression can be anything but theoretical.
If the industry is going to limit nearly all physically disabled actors to roles defined by physical disability, non disabled actors shouldn’t be surprised when there’s anger at seeing those roles lost to actors who are not physically disabled. If only 2% of roles are disabled characters, to begin with, and 95% are played by actors without disabilities, that’s a systemic employment barrier.
Creative expression has different bases. Some of us experience disability as an event that affects our lives and some experience it as a component of our identity. Many of us experience both.
In creating disability narratives, this difference positions disability either as an event that drives the plot forward or as a component of identity that contributes to a character. Both are valid and both can lead to high- or low-quality work.
That difference is not going to be resolved. It’s not even a problem to be solved. In terms of acting, I would say it’s even a mistake right now to be drawn into too much arguing about the specifics of who’s “allowed” to play what roles.
The problem is that actors with visible disabilities are shut out of casting and that prevents careers — and clout.
One reason is that it too easily reduces us to diagnoses. Another it that it risks inhibiting imagination and empathy. I have muscular dystrophy and use a wheelchair now. I spent my childhood misdiagnosed with cerebral palsy. I’ve had agitated depression. And I swear to god I don’t know if I’m sweating right now from frustration or menopause. I have also had colds, pneumonia, and tummy-aches. What types of disabilities are “appropriate” for me to play? Should only people like me, who grew up with a disability, play roles of characters who had disabilities in childhood? And where does this leave the vast numbers of actors with invisible disabilities who have succeeded in passing as non disabled?
It’s an interesting discussion — what constitutes “enough” experience — but it’s currently entangled with the real issue to be confronted: biased business practices.
Trying to avoid thThe argument that a non disabled actor — in this case, Bryan Cranston — is simply the superior artist doesn’t hold up. What are all of these roles that visibly disabled actors have performed in such an inferior fashion? Spoiler alert: They don’t exist so you have no actual comparison. Just an assumption that visibly disabled actors wouldn’t be as good or better.
And, in terms of artistry, here’s a question: To what degree does the non disabled actor depend upon a prop to get the acting job done? Because when it comes to physical disability, I’m not sure audiences would buy him as a wheelchair-user if he weren’t sitting in a wheelchair. Props are important, yes, but they’re not a substitute for an actor.
The problem is that actors with visible disabilities are shut out of casting and that prevents careers — and clout. That’s the problem in the business of show. That’s why Cranston’s casting is being called out.
This is why losing one more exceedingly rare lead role — a wheelchair-using character — is so infuriating. Using the tired “Because BUSINESS” is a sloppy excuse for systemic bias that produces abysmal hiring rates. Casting is currently a business that effectively places its every office on the second floor of an elevator-less building and then says no wheelchair-using actors showed up so they just don’t want it enough, etc., etc..
Visibly disabled actors are not considered “appropriate” for casting in roles where there’s no mention of disability. The truth is that, had he been a visibly disabled actor, casting statistics show how unlikely it is that Cranston would have been cast in the many, many roles that, together, have built his career and now provide his clout.
If the industry is going to limit nearly all physically disabled actors to roles defined by physical disability, non disabled actors shouldn’t be surprised when there’s anger at seeing those roles lost to actors who are not physically disabled. If only 2% of roles are disabled characters, to begin with, and 95% are played by actors without disabilities, that’s a systemic employment barrier. Starvation seldom breeds generosity.
This is why losing one more exceedingly rare lead role — a wheelchair-using character — is so infuriating. Using the tired “Because BUSINESS” is a sloppy excuse for systemic bias that produces abysmal hiring rates.
Casting is currently a business that effectively places its every office on the second floor of an elevator-less building and then says no wheelchair-using actors showed up so they just don’t want it enough, etc., etc..
When an actor like Bryan Cranston finally has to actually compete with physically disabled actors who are in his casting echelon, then we can have that thoughtful discussion about balancing representation and artistic expression. Until then, it’s just another business getting away with unfair practices. And not even very creatively.
How I love crafting heartwarming holiday cards. Like Tiny Tim subverting the dominant paradigm of disability/charity.
You may not know this, but fundraising is a hotbed of subversion if you’re disabled (like me) and raising money to fight ableism instead of being used as an ableist prop by someone else.
You know what goes great with a paradigm shift? A new narrative.
One where disabled people lead the philanthropic work that affects them. As in:
You let me, a disabled donor, match your monthly gift that will support cross-disability civil and human rights defense led by disabled advocates at DREDF. If you take this action, you’ll be making a gift and helping make philanthropy more inclusive. So it is with real glee that I throw down this match offer to help support DREDF’s 40th year as our country’s leading cross-disability legal and policy defense fund:
If you become a DREDF monthly donor by 1/31/19, I will match your first $40. Ex.: If you give $20 per month, I will match the total of your first 2 months, or $40.
I’ll know it’s a match gift because you’ll include “Nothing about Tiny Tim, without Tiny Tim” in the note field of your online gift.
You may know me as the Queen of Sardonica or as A Crip in Philanthropy but my days are spent fundraising at DREDF where I’m often serious for up to entire minutes at a time.
Our education rights work alone tells you why: “Dickensian” describes schools that lock disabled students in closets, hold them face-down in 4-point restraints, and fail to teach them how to read.
Individual contributions are critical because both impact litigation and policy require a big investment of time and resources, and foundation funding for disability advocacy is scarce.
I’m a DREDF major donor now because I have complete trust in the integrity, independence, and brilliance that the staff (who are not me) bring to disability civil and human rights advocacy.
If you know, like I do, that DREDF has made the world better than it was 40 years ago, please join me in giving a year-end gift. Share DREDF with someone you know.
If a monthly thing isn’t for you right now, no problem. We appreciate every single gift that will fuel our 2019 work to defend those gains and – let’s hope – advance them over the next decades. Together!
THANK YOU AND HAPPY HOLIDAYS!
I’m a crip in grant-making philanthropy! Whoopee! As of November 1, I became a Trustee of Awesome Foundation’s Disability Chapter. It only took 25 years of being on the grant-seeking side of
#DisabledInDevelopment. I’d like to thank every teacher and boss who helped me with inaccessible toilets along the way. You had my back when I was angry about something even I didn’t fully understand: I was up against a real thing – ableism – that created structural barriers to doing my job well.
And that brings me to: How to Do Inclusive Philanthropy.
Actually raising money, day in, day out, at DREDF doesn’t leave a whole lot of time for big-vision work. But I have one for inclusive philanthropy:
Philanthropy that has evolved from being the hothouse for benevolent ableism to a force for fighting all forms of ableism. Wash that charity right out of its hair.
I could spend months fine-tuning an inclusive philanthropy action plan but I’ve got a year-end campaign to run. So. Here are what 25 years of being disabled in development tell me are the ways to start scrubbing the charity model out of philanthropy:
1. Go inside out, bottom up.
Start by respecting the knowledge your current staff likely has, especially your front-line, support, and administrative staffs.
The key: Lose your bias for titles and fancy degrees, and find out who in your organization has an interest in flexible schedules, paid family leave, and other such benefits. Why? Because disability, chronic illness, and aging may be driving that interest. Because they may feel they’ve been “special tracked” and blocked from moving up. That makes them more likely to have a vested interest in disability inclusion.
Why: Real change takes dogged persistence and these employees could well be your long-haul champions for transformative change.
2. Demonstrate that disability inclusion is not “the Other” in your philanthropic organization.
One of the most common misperceptions about disability is that it’s just not something your organization “does.” Fill out this simple “disability inventory” and you may well see disability is all around you, but called something else.
Why: There absolutely will be folks in your philanthropic organization who believe disability = other people. They’ll be more receptive to the dogged persistence of your disability champions if it doesn’t mean “new stuff.”
3. Organize. Organize. Organize.
Help tell the real-life, true experiences of being disabled in development so that our invisible knowledge can help make glorious, ableism-ending change in philanthropy. Contact me if you’d like to be profiled (by name or anonymously) and featured in my new #DisabledInDevelopment series. I’ve got brief interviews with 3 amazing people — all women of color — in the works.
Compensation available because I don’t expect unpaid consulting from disabled people.
Why: So, so many people in philanthropy do not have the option of being out, safely, as disabled. #DisabledInDevelopment is intended both to help normalize disability in the sector and to provide an accessible platform for describing the structural discrimination they encounter and that all-too often halts career advancement or forces them out when they “hit the porcelain ceiling.”
Gretchen Lowe, age 35 at the 90’s midpoint, was not dying, as she was at pains to point out more frequently than she would have wished. She had muscular dystrophy, a distinction often lost on those who equated strength with muscle mass, consciousness with cognition, and worth with productivity. A growing chorus assumed this would be her preference, death before disability, rather than the indignity of grappling with that terminal condition from which the chorus-members, themselves imperfect, suffered: life that is both enviable and bleak, and always, always unfair in distribution of the same.
Like so many of her friends, Gretchen had swapped one coast for the other after college and she left DC, a city of increasingly impossible winters, lawyers, and three years of an uninteresting technical proofreader job, and moved to San Francisco, a city of manageable weather, bike messengers instead of lawyers, and apparently no editorial jobs. Five years in, she was the administrative director of a small free clinic for women and had cycled through four shared flats before the Recluse, her boyfriend, gave up his Pacific Heights studio and moved in, more or less, to Gretchen’s two-bedroom flat on a quiet street in Cole Valley.
Like ancient Rome, San Francisco was a city of hills and, with few exceptions, honored its dead by housing them firmly and in perpetuity outside its official boundaries. Gretchen lived and worked firmly within those boundaries, mostly because taking public transportation to and from work everyday took what limited energy she had. She did have an increasingly hard time breathing and walking, her grip was undeniably poor, her fingers lacking in dexterity, but she had an even harder time imagining herself dead, or wanting to be dead.
But she had no master plan, no Disability for Dummies to be her guide, just a lifetime of experience in a body that was weak, breathless, and clumsy, and getting more so year by year. So Gretchen did what was practical and what made life – her life, none other’s – worth living. She kept to the flatter parts of town, used the bathroom before she left home and work, and thought more about her next meal than eternity. In this last concern she had the unwavering support of her family; Gretchen did know how to find a decent restaurant.
She needed this particular skill on this particular evening because her mother, Alice, had flown in. Festive feelings aside, Gretchen had serious misgivings to broach, misgivings that were about a clinical research opportunity that divided them called “Genetic Reparative Therapy.”
When Alice had first excitedly called her daughter months before about GRT, Gretchen couldn’t bring herself to say a hard, “No.” She herself didn’t know exactly why she was flat-out rejecting this “cure” — or why she couldn’t tell Alice no. She’d certainly done it before.
It wasn’t until she burst into tears after half-watching an old Sally Field movie about a mother not leaving her daughter that the feelings coalesced within her as a single as-yet-unspoken fear: “I could be taken from you and you would never get me back.”
Issue No. 3: The Ally Issue
or You Can Lead a Nondisabled Ally to The Google But You Can’t Make Them Use a 100% Familiar Search Engine to Find Available Access Tools Themselves
In which Mx. Crip-Manners points out how good manners make good allies
“We’re super-excited you’ll connect us with disabled women for our project! We don’t know how to clean out a conference room though so can you take that on?”
Yes, it really is that basic: Do you invite abled guests to muck out your space for your shared meeting or event? I’m guessing you don’t. You consider your space to be your responsibility. Just as I, a wheelchair user, don’t expect my walking guests to bring their own chairs. But you expect your disabled invitees to either resolve your access barriers or teach you granular how-tos. I know this from decades in grassroots women’s organizations and philanthropy.
That’s not okay.
My considered position is the result of 20-plus years of waxy bummer build-up that comes from, first, being invited to be a partner or guest — and then being tasked with “the early shift of ableism” to clean up inaccessible messes.
Expecting this is just plain bad manners from you, otherwise decently-funded organizations, including foundations. Isolated requests for help, particularly under clearly difficult circumstances, are not the issue.
Did You Know?
Disabled people are not magical access specialists. We learned stuff. By learning. We are always learning new stuff. By learning. As Crip-Yoda says, “Learn you must.” #CripTips
When the new Beetles came out, Gretchen had kicked around the idea of ditching all of the cab business and getting a car. Since cars came with lots of options but none that made the car driveable by her, she and the Recluse realized the car would have to be modified. Gretchen heard that lots of disabled people got financial help for such things through Voc-Rehab.
Look. You work. You’re not really eligible to be disabled. Air-quotes.
One sleepy post-lunch hour in her clinic office, she gave in to an impulse and looked up the number. When no one picked up at the main number, she worked her way through the extensions until a deep, annoyed voice said hello. That one call into the San Francisco office of Voc-Rehab pretty much cured any hope she had of even minimal financial assistance. The call also showed how employment was a universal solvent on the human stain of disability, at least where government agencies were concerned.
The counselor had more to say, nasally, on the overall lack of money available and went on to say that he himself was legally blind and had been waiting five years for a computer he could use. To do his job. Voc-rehabbing people who were legally blind, for example. So complaining to him was not really something he would be real open to hearing. If she didn’t mind.
Want in on the conversation about ableism? Check out what disabled advocates, civil and human rights activists, and philanthropic leaders had to say at the Twitter chat on 10/12/18 about philanthropy and inclusion. Then make your voice heard at #FundDisAdvocacy.
Foundation funding for disability advocacy dropped 23% between 2011-2015. Disabled people were the only group to see a decrease. Most funders are “aware” of disability but do they see ableism and structural discrimination? How do we make funders see disability civil and human rights as areas of actionable, urgent advocacy? A first step is recognizing disability as a constant but hidden set of variables in nearly all formulas for civil and human rights.
I’m writing to you in my capacity as a community organizer – which is another name for a social justice fundraiser.
I believe you and I share common ground on the importance of advocacy:
We know that the great civil and human rights gains of the last century, envisioned and organized by the grassroots, were built to last through the courts and legislation, and they will continue to be the battlefields for preserving them.
I’m writing because disability civil and human rights advocacy is missing from your funding portfolios.
The first step in changing that is frank communication.
When you do not explicitly say “disability” in funding advocacy, you send a message to us: Deny, disown, and downplay your disability identity. That denies all marginalized communities access to our hard-won legal tools and, worse yet, our expertise in using them.
You may understand this letter, at first, as pertaining to a discrete group: disabled people. But it is a fundamental mistake to think that civil and human rights for any community can be fully achieved if we neglect, forget, or disregard such a basic human condition as disability and allow it to be the “natural” cause of poverty and abuse. If we are not safe or free to be vulnerable, then we cannot call ourselves safe or free. Our society is not safe or free.
He strides into the cafe we’ve agreed to meet at. Leggy, silver-tressed, with creamy skin lightly dusted with freckles, Harper’s president and publisher Rick MacArthur is a knock-out at 62 even in the rumpled khakis that glide over his still-boyish hips. When he collapses into a chair, he lays a Trapper Keeper on the table, murmuring that it’s ten times better than that [bleeped] phone nonsense.
Announcing that this is his cheat day — “I learned recently this referred to food!” — he peruses the menu — “This menu’s paper quality is fantastic, isn’t it?” — before ordering a green juice, bananas Foster, and a double Scotch. He asks me when the guy who’s doing the interview is going to show. He is adorable. He asks again, using the words, “Chop chop.” He’s everything this interview said he’d be.
I’m still mesmerized by how stunning Rick MacArthur is, in person. The Author’s Guild photos don’t do him justice. I ask who dressed him for our interview and he gazes at me with fathomless confusion before laying his fingertips lightly on his shirt-front and saying, “I should know this! He’s worked for our family since before I was born. He’s going to be so mad at me. Not that he’ll ever express it.”
As the long-awaited second installment of Tales From the Crip’s series, Imaginary Interviews With People Who We Wish Were Imaginary, our new FuckAbility™ Research Council‘s Crip Carpet Correspondent, Janky Wheelchair, follows up on TryHarder™ Magazine’s recent take-down of John Hockenberry’s
journaling essay, “Exile,” by devoting an entire episode of THE SIT-DOWN to publisher of the essay, Harper’s Rick MacArthur.
The vivacious magnate talks nonstop about why paraplegics can’t sexually harass anyone; why he, a Francophile, is launching a Moi Aussi men’s movement to counter Me Too’s “Soviet-style” excesses; why paper is the future of Harper’s; and how everyone forgets how great John Hockenberry was in the film Coming Home. Keep reading for the unedited transcript of Janky Wheelchair’s exclusive hard-hitting interview with lively minx Rick MacArthur.
Flambee your bananas and keep the Scotch flowing because Harper’s RICK MACARTHUR is gracing the cover of NotPeople magazine as the CLUELESSEST MAN ALIVE!
Issue No. 2: The Takeaway or Please, Take This Essay Away
In which The Crip shares 2¢ takeaways from John Hockenberry’s 7,000-word essay about the loss of a high-status career identity that was purchased and published by a pretty damn high-status periodical.
THE TAKEAWAY! Hockenberry says none of this is justification for offensive behavior toward women but it sure seems like he does:
“Being a misguided romantic, or being born at the wrong time, or taking the wrong cues from the sexual revolution of the Sixties, or having a disability that leaves one impotent at the age of nineteen—none of this is a justification for offensive behavior toward women. But is a life sentence of unemployment without possibility of furlough, the suffering of my children, and financial ruin an appropriate consequence? Does my being expunged from the profession in which I have worked for decades constitute a step on the road to true gender equality?”
THE TAKEAWAY! Hockenberry thinks “unemployment” is the same thing as “not getting the same high-status work I once had and still want.”
Did You Know?
You may be working three jobs but those aren’t real jobs if they’re not prestigious. Take note of this, low-wage workers. #CripTips
2018 UPDATE: STILL ALIVE
STILL OPPOSED TO EUPHEMIZING DISABLED PEOPLE BY NORMALIZING OUR SUICIDES THROUGH LANGUAGE
I’m still disabled, still degenerating, and still filled with joie de crip, but even if I weren’t, I still wouldn’t be buying the double-speak that calls my suicide “a rational choice,” “death with dignity,” and “ending my life on my own terms,” while a (seemingly) nondisabled person’s suicide is “a public health problem.”
The terms we use in talking about an issue set the terms of the debate. Suicide is a public health problem. Distorting that through
sophistry marketing language feeds suicide contagion.
September 10 is World Suicide Prevention Day. But for a disabled person like me, it’s just not my day. Literally.
What would be a “threat of self-harm” for you, is a “personal choice” for me.
What calls for an intervention for you, calls for a pre-suicide party for me.
Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.
When it comes to people like me, suicide is rapidly becoming normalized. Or more exactly, suicide is being erased through re-branding. “It’s not ‘suicide’! It’s ‘ending your life on your own terms’!”
“Now I must confess. I must tell you my secret. I’m not a medical doctor. I’m a doctor of philosophy. But greater even that, I am a humble man. A proud Utilitarian.
“In the great tradition of the Enlightenment – a paradoxical name if you have come to believe like I have that the light of reason is too often used like a policeman’s flashlight pointed right at your eyes – I embraced utilitarianism, or as it is known in the common parlance as, “If it feels good, do it,” or “Something that feels so right could never be wrong.”
“I believed – no, I knew – that happiness was the most important thing because it was the true foundation for goodness. A good quality of life makes you happy, and measuring the quality of a life couldn’t be easier – is there an absence of a reason to be sad?
“I loved the effort and rigor of proving that happiness was what was easy, comfortable, familiar. I felt a responsibility to help end the suffering of people who will never know happiness because their lives are inherently difficult, uncomfortable, and filled with change, all of it really bad and pretty much a downer for everyone around them.
“I realized this when I was recovering from a difficult, uncomfortable, and unfamiliar mountain-climbing accident I had had right after I divorced my second wife because she wasn’t enough of a challenge for me and I was bored. After my injuries healed and I was a real person again, I had everything, a book-lined apartment, a light teaching load, and a beautiful dog and cat.
“It was a way I had never felt before. The simplest things were filled with enjoyment. Max and Emma were everything to me. Their lives, my life with theirs, demonstrated the nature of happiness. Taking care of them, guarding their happiness, was making me a good person. It all made perfect sense.
“I began to wonder why Max and Emma were considered lesser beings than my colleagues in the department, particularly the older ones and the guy with the hearing aid. I began to resent the condescending questions about my ‘pets.’
“One day at a faculty senate meeting, I had my awakening. Max and Emma’s consciousnesses were equal to that of my human colleagues. In some cases superior. They had, after all, achieved for themselves lives we might envy in their ease and comfort. What they lacked was respect from others. What they lacked were their rights.
“I wrote a book denouncing the human monopoly on consciousness, worth, and legal standing. I worked night and day to prove that ease, comfort, and familiarity are the hallmarks of a high quality of life. When my book hit the university bookstore’s bestseller list, I had the department eating out of my hand. What did I get at home for my pains? I’ll tell you. I got a dog I found eating my cat’s shit. He’d developed quite a taste for it. And she was no better, I swear she was filling that litter box like a buffet steam table just to spite me. It’s called copraphage, and apparently it’s quite common. This was not consciousness I could champion.
“I became bitter for a time. All of my hard work, pain, and venturing into the unknown to express the central utilitarian values of comfort, ease, familiarity, that the quality of life is equivalent to the quality of consciousness, had gone for nothing.
“I received a letter around that time from the doctor who treated me after my mountain-climbing accident. In reviewing his records after a lawsuit was filed against him, he found a small tumor in my brain x-ray he had missed before. Needless to say, he was quite concerned. This could really jeopardize his chances in the pending lawsuit. Negligence, how appropriate. I returned to see him and he removed the tumor immediately.
“This episode raised two interesting points. First, the tumor was not actually connected in any way to my accident. It could have gone undetected for years until its bulging dimensions caused me to black out, go into seizures, or compose full-length operas in the time it takes to heat a Lean Cuisine. So you might surmise that this ostensibly bad bit of experience – losing my grip on Capitan and becoming quadriplegic for nearly three days – was actually to my advantage. I had thought my only luck had been when the neurologist, a bottom-half sort who thought ‘futile care policies’ were something vassals brewed up for useless serfs, showed up for one more pin-prick exam before they pulled the plug as my eye-blinks were ordering them to do. I would have fallen off the bed in shock when I felt that jab in my left thigh if I’d, you know, been able to move.
“But as Doc Missedthetumor observed, it’s a good thing these neurologists rush from patient to patient or my wishes would have respected me right into the grave.
“An even stranger occurrence followed, though. I was awake during the surgery to remove the tumor, as is the normal procedure. They were doing a sort of color commentary to keep me posted on what was happening, probably going into too much technical detail because they thought the ‘Doctor’ before my name meant I was one of them. Just after the lead surgeon announced a clean excision, I lost all interest in the nature of consciousness. I couldn’t have cared less about the rights of animals, or people, or the distinction between sensation versus perception. If you told me, ‘The end justifies the means,’ I would have said, ‘Whatever.’ I started noticing how my personal experience was horning in on my objective arguments. I was filled with a desire to read Nietzsche, which wasn’t odd except that what I wanted was to read a few pages and then fight in public places about what I’d read. One day, I thought, ‘Well, that’s just the way it is,’ and it hit me. I wasn’t a philosopher anymore. I had become merely philosophical.
“Needless to say I was useless as a teacher. After a couple of years, my department head noticed the negative student evaluations – though they thought I’d make a great undergrad and had tremendous potential if I’d only apply myself – and called me in. I came clean. Confessed I had a condition that disabled me as a philosopher. It felt so good to finally be open about it. Hobbs was kind, asked me how I was doing, told me he’d suspected something was wrong but felt it was a private matter best left unremarked.
“When I assured him I had stopped struggling and was learning to live with my limitation, his demeanor changed. He became more officious and said he needed to reflect upon the situation. We would speak soon. At first I was nervous but my now-habitual philosophical attitude was in control. I simply thought, ‘Whatever will be, will be,’ instead of grinding each word Hobbs had spoken into a fine powder in search of his first principles. Because I’d forgotten Hobbs didn’t really have any first principles.
“We never spoke again. The university sent me a letter of separation, stating that because I was unable to perform the essential tasks of my position, I was relieved of all teaching duties and publishing expectations. Because I had tenure they couldn’t dismiss me; they recognized I had a discipline-related disability that was beyond my control. I was welcome at all social events and meetings, but they could not reasonably accommodate me and my take-it-as-it-comes reactions.
“The real issue, of course, was liability. The department was small and already had few students. Parents didn’t like their kids majoring in philosophy. If word got out that I wasn’t harping on distinctions between being and Being, or my bioethics class was questioning its own preconceptions about ‘happiness’ or ‘personhood,’ rather than debating how many days a disabled infant’s parents have to decide whether to end the child’s life, those parents might start to ask why they were pouring money into a philosophy education and getting nothing more than sociology.
“Naturally, I sued the university. Naturally, I lost, it being a disability case. I was left with no career, a shit-eating dog, a crap-happy cat, and an apartment I could barely afford after the lawsuit. At first it didn’t get to me. Something will work out, I said. My book was still selling. I thought it was the most ridiculous piece of trash ever written, but I had to eat, as I put it so philosophically.
“But the lawsuit taught me something valuable: how enjoyable it was to bother someone else. Even though I lost, I had been something of a disturbance, and that pleased me. I had to make a fresh start, reinvent myself again. So I took every penny I had, hired the most cutthroat attorney I knew (a former student of mine, actually) and sued the bejesus out of Doc Missedthetumor.
“This time I won. Well, settled big. Personal injury always has an edge on individual rights. Doc Missedthetumor quit medicine and opened a one-hour photo where his film-reading skills were finally in an appropriate environment. Doc claims to be a much happier man now, after me dragging him through the mud. He told me this by saying I ruined his life. He even threatened me, a true sign of our bond. He warned me that the tumor could grow back, that it may already be pressing on another lobe and distorting my thinking in some new and possibly unsavory way. He opened my eyes to what I’ve come to call Transcendental Misanthropy. I keep his letter to me as a testimonial, in case I ever need to file a restraining order.”
[To Be Continued]
There’s No Cure for Gretchen Lowe is an unpublished coming-of-middle-age crip lit novel. Within the broader realm of literature featuring characters with disabilities — #DisLit and memoir — #CripLit presents an understanding of disability using the lens of the social model. It eschews disability as a narrative device and shortcut for conveying sentimentality, heroism, and disaster to readers.
My Dear Friend:
You wrote of a growing strain on your spirit that seems to have no reasonable source, as your position is unobjectionable, your master provides you accommodations enough, and your annual fundraising goal numbers not unduly burdensome. What then?
You ask if you are perhaps “a loser.” I think not.
During my youth, my father — a fundraising titan who fought for funding alongside Major Donor — became disgusted with my inadequate Girl Scout cookie sales and sent me away to a notorious fundraising academy, one of the very strictest of the Transactional schools.
I was miserable and branded a failure — a loser — at “working the room,” and “friend-raising,” and so on, until I was confined to the barracks for insubordination after I refused to ply my trade at a memorial service, trading donations for signatures in the guest book.
But then I took a History of Fundraising in Western Civilization class. I learned about the Philanthropeon Wars.
I learned about the lost city-state of Telethonika, where disability democracy had been born around the year 504 BC. It is a loss that echoes down through millennia through some fundraisers who have the disability consciousness and who feel the shadow each year as Labor Day approaches. You may be feeling the echo of the fall of Telethonika, that flattish plain located one mountain over from Sparta.
The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights
An earlier version of these remarks was shared at Congregation Beth Jacob in Redwood City, California on March 3, 2018. I deeply appreciated their welcome when I was invited to address their community by Anne Cohen, an activist, disabled parent, and board member at the organization where I am Director of Development, Disability Rights Education & Defense Fund (DREDF) or, as Anne has dubbed it, “the ACLU of disability rights.” CBJ’s cross-disability access allowed me to take the first step in organizing community support: communicate.
I grew up with a disability, one that is genetic. I have been a plaintiff in an ADA access case here in California. It involved a bathroom. That required a lot of talking publicly about my using the bathroom. For disabled people like me – physically disabled — being disabled means never knowing where your next accessible public bathroom is. Today. Nearly thirty years after the ADA was passed. And keep in mind those 30 years coincide with my fundraising career in social justice non-profits and their philanthropic allies. Those are whole decades of trying my best to use empathy and imagination to shift that stubborn disability narrative that says I receive but can’t give. That disability is a health thing. That I need a cure when a toilet would be preferable. That I am charity, personified, not justice, denied.
Alice’s schoolteacher handwriting greeted Gretchen when she flipped through the mail that evening. It was a floridly pious Mother’s Day card with a letter enclosed. Her mother must have sent it right after Gretchen had called about the board meeting fiasco. Oh Alice, Gretchen snorted pleasurably. I couldn’t have picked a better card myself.
Underneath the card’s summary appreciation for maternal sacrifices, physical and emotional, Alice had written, “Thought you might like to see the enclosed item right now. I think it confirms that we are related. I cannot take credit for why you are who you are but I did have a hand in it. Then again, you were always a rotten child. Not that I had anything to do with that. Love, Mom.
The letter was her mother’s same handwriting. Cheered, Gretchen set to reading it. It was dated from May 1970 and addressed to a Desmond Wallace, Chair of Fundraising Operations for the National Cerebral Palsy Association. Oh dear.
I realized this after Congress voted this week to deny me the pleasure of peeing like non-disabled people do, which is to say, without having to do any kind of math, scheduling, or general advance planning when going out to public places.
But by being denied the minimum, I’ve learned to want everything.
You know what would be great? If I could be envied by non-disabled people.
Yes – envy’s bad! I shouldn’t want to be envied. I should want inclusion. Justice. Equality. I should want respect, love, acceptance.
Of course I want all that. But I want more.
I want to be envied by non-disabled people. Not admired. Envied.
10. Because it’s racist. (In a rush? You can stop here!)
9. Because education policy is entwined with juvenile justice and incarceration policies for students of color with disabilities and, funny thing, disabled advocates of color think those issues are kind of urgent.
8. Because we lack the nanotechnology to measure the moral integrity of erasing students of color with disabilities from the very issue that derails and destroys their lives in vastly disproportionate numbers.
I’m Ingrid Tischer. You may remember me as “headless female torso using a walker” from Anderson Cooper’s “ADA Hit-Piece of Horror” on 60 Minutes. But I’m here today to tell you about a different type of horror: Being a plaintiff in an Americans with Disabilities Act (ADA) lawsuit, in which you’re presumed greedy and where whatever happened to you was no more than an inconvenience.
Four years ago, I began a multi-year metamorphosis into “non-vexatious litigant wanting to use a toilet.” That makes me the face of ADA lawsuits. But, in the 60 Minutes segment and the continuing slew of hand-wringing pieces about ADA scam-artists, you don’t see any faces like mine. A face like mine disrupts the narrative of the selfish — or gullible — cripple who financially kneecaps overwhelmed small business owners over access technicalities. You don’t hear much about how the proposed H.R. 620 would also apply to our considerably larger corporate citizens. So I’m putting my face right out there. This crip stays in the picture.
Despite the media’s fixation on “drive-by litigation,” — a completely non-accidental choice of phrase that associates fighting for my civil rights with gang violence – I was using the ADA as it was intended to be used, and should be used. As a civil rights law that, in 1990, made me a full US citizen at the age of 25. But in addition to the external changes in public spaces that have literally opened doors for me, the ADA is responsible for a profound internal shift in my thinking: I have expectations now that I didn’t grow up with: that I can enter a store, eat at a restaurant, cross a city street, open my office door.
In my particular line of work — fundraising — I have the “challenge” of making the case for funding cross-disability civil rights work from institutional funders who are still predominately stuck in the disability = tragedy trope.
I need allies from outside the cross-disability communities because that’s how philanthropy — and everything else — works: it’s who you have relationships with, who you can ask for help, give help to.
I was really excited about closing out Women’s History Month this year by developing and delivering an interactive workshop, “Building Your Organization’s Capacity to Ally With Girls Who Have Disabilities: Principles to Practices” for fellow (sister?) Alliance for Girls members, as part of my work at DREDF. (To the members who attended — you were GREAT participants!) Based on issues I’d recently written about, I wanted to call it “The Crip Sense or ‘I See Women and Girls With Disabilities. In Your Organizations.’” (Scroll down for 3 “posters” of workshop content.)
I said that part of having The Crip Sense is seeing things that are painful:
- Disability human and civil rights violations. Way too many of them.
- Violence against disabled children and adults – especially people of color (PoC) with invisible disabilities — even by caregivers, school personnel, and law enforcement officers, and that such violence at home, in school, and on the street is excused or rationalized.
- Girls who have internalized stigma that makes it feel “normal” to disown, downplay, or deny having a disability.
- Girls who hear – even from some disabled people – that “initiative” and “personal responsibility” can defeat systemic barriers born of — and well-maintained by — prejudice, and that they’ve failed if they’re defeated by rigged systems.
Why This Workshop, Why Now
In 2017, an inclusive movement includes cross-disability civil rights organizations, as a given.
I represented DREDF in this conversation but it’s stirred up a big case of the feels about “choice” and being a liberal woman writer with a congenital disability, and the context this establishes for storytelling, and resisting and persisting. I continue, after 30 years of adult activism, to feel like I have an early shift of ableism — prepping the world to accept that I exist — while my nondisabled fellow human resisters and persisters get to sleep in. And if I weren’t white, conventionally educated, cis gendered, unthreateningly queer, and had all sorts of middle-class, married advantages, I’d probably never sleep at all. Image courtesy of the Disability Visibility Project.
Step 1: I Exist!
As many people who know me know — all too well — I’ve been writing a novel* for the past 400 years or so. The novel, The Cure for Gretchen Lowe, is the exploration of a what-if premise: What if a congenitally disabled woman were offered an experimental therapy that would cure her? The cure itself, Genetic Reparative Therapy (GRT), was never the point of the story because biomedical research, real or invented, never seemed like the most interesting part of the story. What I’ve been stuck on, like an oyster (or barnacle), since the idea first irritated my imagination was how I saw that my character’s situation began as a will-she-or-won’t-she question. From what I’ve observed in 50+ years of congenitally disabled life, that question isn’t typically a question to The Average Reader. “Well, of course a person like that would want GRT!”
I’ve considered that point of view quite a bit — 400 years allows for that — and much more seriously than I make it sound here. But that assumption also irritated me mightily: As a lifelong like-that-ter, I’ve run up against a lot of nonconsensual of-coursing when it comes to my bioethical choices. Simply opening my story — which I refer to as being “CripLit” — with a genuine choice, not a pro forma one, felt like I wrote in letters across the sky: I EXIST.
I’m FEDup with transactional philanthropy that presumes disrespectful behavior can be overlooked if the price is right. I have now been witness to The Mistake by RespectAbility’s President, Jennifer Laszlo Mizrahi; the unpleased reactions by disabled women of color; some thoughtful initial responses; a cringe-worthy apology-type product; the official statement; and now (I’m guessing), The Great Moving On from uncomfortable conversations about ableism, racism and disabled people of color within the disability rights community.
Part of me — the part that’s still polite to boundary-busting missionaries — initially wanted to say, “I’ve done this kind of racist shit myself. Sadly.” Then I remembered that much of that shit was when I was near the start of my career 25 years ago. When I would have lost my job — and Bi-Pap-providing health insurance — if I kept that shit up in our very progressive free clinic for gyn care. And how I had no safety net if I lost that job.
Everyone makes mistakes but the erring field is far from equal.
Depending on your class, Repercussions, Consequences, & Accountability are either the Three Furies that dog you even when you haven’t screwed up, or they’re the crisis PR firm you consider for damage control.
When you’re poor, unemployed, a woman, a person of color, a disabled person, or all or most of the above, making mistakes is far more likely to lead to words like “unqualified.” You are threatened with unemployment, fired, and/or are cut off from public benefits. In the worst case scenario, you haven’t made a mistake at all but are questioned, blamed, violated, beaten, shot, killed for being the person you are in public, in school, on the road, and at home.
When you’re affluent or “comfortable,” employed, a man, white, not disabled, or all or most of the above, making mistakes is more likely to lead to words like “executive coaching,” and “Let’s bring our communications person in to help.” In the worst case scenario, you “transition out” to what is often a better-paid job, aka “failing up.” If you are in a position to be a volunteer who has significant authority, the usual checks and balances on your behavior can be even weaker.
That’s when I first realized how integral money, class privilege, and power are to this recent incident. I haven’t seen any real repercussions, consequences, or accountability for Mizrahi — except for a bump to her prestige — and that’s just one infuriating aspect of how race and class insulate those with power.
September 10 is World Suicide Prevention Day. But for a disabled person like me, it’s just not my day.
What would be a “threat of self-harm” for you, is a “personal choice” for me.
What calls for an intervention for you, calls for a pre-suicide party for me.
Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.
When it comes to people like me, suicide is rapidly becoming normalized. Or more exactly, suicide is being erased through re-branding. “It’s not ‘suicide’! It’s ‘ending your life on your own terms’!”