Hey! Here in the back. ScarJo here. I’m FED UP with the lack of respect, okay?
Look, I’m a long, faintly pink line that starts just the above the shoulder blades and ends above the ass-crack. Yeah I’m real sorry about offending your delicate sensibilities. I moved in when my landlady was about 13 and had had a spinal fusion cause her scoliosis was out. of. control. Whereas I held things together.
I was a lot more colorful in those days. A lot more sensitive. Cut nerves I can handle though. But I’m supposed to accept I’m shameful? I’m not exactly blaming my landlady, who was a teenager at the time, for trying to find bathing suits and a prom dress that would hide as much of me as possible. She was a new driver still looking for an unmarked exit off the Bullshit Highway.
“Would you prefer unblemished and dead?”
Remember, all I am is a pink line, with the tiniest smidge of a ridge, on a person’s back. We’re not talking about a sucking chest wound. Or pus. Or whatever’s wrong with Steve Bannon’s complexion. I’m not asking to be a big deal, I’m not asking for attention, for cripes sakes. It’d just be nice to get out and get some freaking fresh air once in a while, you know?
But nooooooo, I’m a SCAR and I must be hidden. Continue reading
Join Our National Call To Repair Or Replace Recalled Breathing Devices
Individuals who depend on recalled ventilators and other breathing devices manufactured by Philips Respironics have joined in a letter, along with over two dozen disability organizations, demanding that Philips repair or replace the devices. The recall was announced in June, stating that the devices were found to release potentially harmful particles and gasses, but offering little information and no timeline for corrective action.
I’m among the affected individuals and have been part of a small group of users organizing a response with the support of the New York Law School and its Civil Rights and Disability Justice Clinic. “Respiratory equipment is not like a car that’s faulty. You can stop driving the car, but you can’t just postpone breathing. So we were given a really ridiculous thing that they called a choice, which was use it or don’t,” I told The Verge.
Update: Philips announced a repair and replacement program for one of their recalled models, the DreamStation, on September 1, 2021.
- If you are affected by the recall and want to sign on to this open letter and/or speak to the media, complete this short form.
- Share this letter with your friends and family, elected representatives, and any media outlets who may not be aware of the recall.
- If you use social media, share your experiences with hashtag #SuckYouPhilips.
The full text of the group’s press release follows. Continue reading
I’m FEDUP with the Muscular Dystrophy Association’s (MDA) Telethon. Unlike other disability groups, it’s still teaching children with neuromuscular diseases (NMDs) that their role in fundraising is to perform their disabilities and/or be treated as passive props in an ableist play. There are better ways to involve all children. Example: The Girl Scouts’ cookie sales.
5. Selling cookies is an age-appropriate fundraising activity, just as it was for me as an 8 year old Girl Scout. Versus MDA putting even younger children on television to have their medical status be talked about and possibly misrepresented.
4. A cookie in hand is better than (more than) two decades of promises of cures in the indeterminate future.
3. Girl Scouts tell people that cookie sales help girls go on camping trips that are about having fun with all different sorts of peers. MDA presents their camp as one week of certain children finally being with their own kind after 51 other weeks of a wretched existence and no future.
2. Being a Girl Scout made me feel like I belonged with girls who weren’t necessarily like me – a girl in a Milwaukee back-brace who couldn’t walk much – whether it was by sharing the cookie sales or camping together.
1. Girl Scouts don’t say, “Please buy some cookies because being a girl makes me half a person,” or “Buy my cookies or I might die.” Continue reading
This post is part of a blog-weekend protesting the re-emergence of the Muscular Dystrophy Association (MDA) Telethon. Sadly, Kevin Hart and MDA are bringing the charity model and Jerry Lewis back like Zombies of Ableism on October 24. We, the Not-Walking-Not-Dead-Yet, have to use our social capital to stop them in their tracks as the Hartless Crips we are.
I’m proud to be one of the disabled activists organized by disabled filmmaker, writer, and activist Dominick Evans to once again protest an event that perpetuates disability stereotypes, spreads misinformation about neuro-muscular diseases to increase donations, and utterly ignores structural ableism. In 2015, I wrote about the end of the Telethon that inexplicably ran every year on Labor Day and was presided over by the guy who claimed his “kids” could never go into the workplace.
This post revisits portions of it with an eye to the continuing issue of employment – if only because disabled children will once again be working at the Telethon for their health care, and potentially taking some very concerning lessons away from that experience about consent and power. Thank you, Dominick, for your leadership!
Hands-OFF Fundraising in 2020: Consent, Consent, Consent
→ In 2020, we need to critique this 2010 image from the Muscular Dystrophy Association (MDA) Telethon in terms of consent as much as we do its infantilizing attitude and fundraising tactics that use disabled people as charity props.
→ MDA needs to be held accountable for their broader transactional narrative in which disabled children are expected to allow strangers to touch their bodies as part of obtaining money for their health care.
→ The “new” Telethon is being held on Oct. 24, during National Disability Employment Awareness Month (NDEAM). There is a connection between the MDA Telethon and employment. What we learn as children is carried into adulthood. The lesson here can too easily become, “I need my paycheck so I have to put up with my boss touching me.”
BONUS! Go here for “Stuff I Know As a Fundraiser Who Has Muscular Dystrophy and Why It’s (Past) Time for MDA to #EndTheTelethon”
BUT WAIT – WE’VE GOT EVEN MORE BONUS! Go here to read why Girls Scouts are better fundraisers than MDA’s executives
I’m FEDup with people saying they can’t adjust to wearing masks even though they help protect lives during a pandemic.
If you have access to a mask but won’t wear it, take a #CripTip: Shift your narrative from, “I CAN’T ADJUST!” to “I will adjust and it will take time.”
I get it. Masks feel strange and uncomfortable. But unless you’re one of the relatively few who truly cannot physically tolerate wearing a mask, face shield, or other face covering, it’s not about whether you can. It’s about whether you want to.
Since you presumably want to save lives during a pandemic, the first step is dealing with what you’re telling yourself about wearing a mask and then, as needed, unpacking that typically messy box where emotions and physical feelings are stored in a jumble.
Note: I’m not addressing this to the, “But I shouldn’t HAVE to wear a mask and I won’t!” crowd. I have many skills but Fixing Selfish Magical Thinking isn’t one of them.
1977. I am 11 years old. I am half-naked in a crowded hospital hallway.
I’ve gotten ten steps down the hall from the exam room where my mother is waiting before I fully appreciate that my fish-white thighs are fully on display.
My thighs are doing their best to walk the rest of me onward. The rest of me is wearing underpants, an all-too-sheer white t-shirt, and a Milwaukee back-brace.
The words, You are half-naked in public, explode in my mind like a bad-dream bomb.
Disability rights advocacy is tough and tiring. Supporting disability rights advocates shouldn’t be. Napping as activism is an easy way to do it!
Here’s what you DO:
1. You, your kid, dog, cat, horse, or sloth companion nap anytime between 3/13-15/20 and snap of photo of you doing it. Post it on social media with #TiredOfAbleism. Include alt-text!
Here’s where you can follow the action:
On Facebook: https://www.facebook.com/events/196300241622595/
On Twitter: @IngridTischer, @DREDF
2. Post a message with your photo: “I’m napping for disability rights because I’m #TiredOfAbleism. We need to bring attention to ableism and support Disability Rights Education and Defense Fund (DREDF) in fighting discrimination. Will you give a donation in honor of my nap?”
3. Add a FB Donate button or a link to dredf.org/support-our-work/, and note “naptivism.” All donation amounts welcome!
→ Scroll down for The Top 10 Reasons Why You Should Support Naptivism for Disability Rights March 13-15, 2020
Disability media peeps! Naptivism is an example of crip-led activism and philanthropy shifting the disability narrative from:
“awareness” to advocacy
charity to social justice
using less accessible fundraisers to more inclusive action
Long ago when I was a disabled fundraiser at Breast Cancer Action, I jokingly said sleeping was more my thing than some 3-day-schlepp for “awareness.” Yada yada, it’s the 1st annual nap-a-thon for disability rights advocacy!
Welcome to Behind the Trailer, where we at the FuckAbility™ Research Council tiptoe into the seriously shady trailers of movies and tv shows to explore whether you’d want to waste more than three minutes on them.
First up – the trailer for SEE, an all-caps Alec-Baldwin-free Apple TV series about being blind while doing some post-apocalyptic camping. The premise: The world’s been destroyed and nobody can SEE but blind actors still aren’t getting cast even in roles for characters who can’t SEE.
On the plus side, Jason Momoa is back in his finest Kal Drogo kit and there’s some lovely styling of rustic interiors that may push me into finally buying a fake-fur throw for our futon couch. Also: Good to see actors of color in lead roles. Continue reading
Issue No. 5: The Disability Etiquette Issue
In which Mx. Crip-Manners is most grateful for any etiquette-related #CripTips the Dowager Crippess of Downwith Ableism might care to offer
What is a ‘forgetting of the access’?
Etiquette is so inextricably bound to access that I cannot countenance this notion of ‘disability etiquette’. Disabled people do not require ‘special’ manners.
There is nothing remarkable about courtesy, except regarding the lack of it many disabled people encounter. I have never understood how any well-intentioned host could ‘forget’ to offer a navigable entrance to guests. We do not ‘forget’ to offer our guests chairs, for example, do we? Why, imagine it – it would be like one of those exceedingly tedious ‘cocktail’ parties where one is forced to stand as if one is in the court of Louis XIV.
You are flat on your back under a glaring light. The bed is hard. It hurts. You don’t move because it doesn’t occur to you to do so, it’s so far beyond you. Each part of you that registers – reports in, so to speak – registers through pain. You body is mapped as a topography of pain. No face or distinguishing characteristics. You are a ground-colored shape dotted with points of glaring, popping pain. Where your head aches on the stone-stab mattress, where the gravel of the sheet is under your arms, where it rasps all along the tube that snakes down your throat, to an unidentifiable pressure on your front, low down.
Your back. Oh. Your back is a barely contained thorn patch in a mad stabber’s arsenal.
You’re not alone. There are voices, professional ones. But no one is talking to you.
There is a nurse above you, meeting your eyes. Her head blocks the light. “You’re awake,” she says. “You’re in the recovery room.”
You make a sound. It sounds dreadful. The first sound Frankenstein made on his slab. The thought of the monster brings back your past, all there was before this light, this slab, this pain. And the face in your reunion with memory itself is: Gene Wilder in Young Frankenstein.
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.
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.
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.
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.
Cranston recently defended his choice, saying it was a “business decision.” Disabled actors make business decisions, too. But their’s are too often, “I gotta eat and pay rent so I’ve decided to give up on the business that won’t audition, much less hire, me – not even to play a disabled character.”
Cranston, and many others, scoff at disabled people’s 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. Continue reading
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!
2018 2019 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: RespectAbility’s President, Jennifer Laszlo Mizrahi making a mistake; the unpleased reactions by disabled women of color; some thoughtful initial responses; Mizrahi’s 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. [2018 UPDATE: Moving on didn’t work out so great.]
Part of me — the part that’s still polite to boundary-busting missionaries who ring my doorbell — 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.
Then I reread the official statement and I hit a whole new level of disturbed.
There’s an odd segue from mentioning a nonspecific action plan to the information that Mizrahi gives to many worthy causes.
“…It takes a deliberate action plan, education and implementation.
“Outside of RespectAbility, I donate to many worthy causes….”
Translation: “Giving money is a transactional arrangement for me; it’s either outright proof that I’m a good person or at least suitable cover when my behavior is criticized as racist.”
You can’t buy back respect. That’s not philanthropy.
Not even when you’ve laid claim to the word “respect” in the name of your organization. This is one place where class privilege hopes so very much to neutralize racism.
Understanding and dismantling my own race and class privilege is a lifetime of work. Being required to clean up my repeated failures was how I learned to act on — rather than merely speak of — these precepts:
- Transparent processes and equitable systems are far more trustworthy than promises made by an individual.
- Women of color do not exist to teach white women how not to be racist.
- Vague reassurances about doing better do not qualify as “accountability.”
Picture it: 1994-ish, the dilapidated second-floor gyn clinic, up from an iron-gated door open during clinic hours to the Upper Haight, San Francisco. A bunch of us staff are in the shabby waiting room with the furniture that will, at one point, give some of us scabies. It’s Wednesday morning, 10:30 or thereabouts, and the gate is closed because we’re having our weekly staff meeting.
Everyone takes a turn, everyone complains.
Nobody gets out of it.
Everyone is deeply offended and affirmed at some point.
It was during one of those weeks that I got religion, disability-rights-wise, and that was liberating but lonely because I was the only one crip who was out. It was where I became visible to myself and then to others. But it was the example of the women of color and/or queer women who showed me how to show up. I had to follow before I could lead.
Our Director had talked our CEO into funding a 2-year Diversity Specialist consultant who will work with our whole staff. Our goal was to improve our healthcare delivery for a diverse group of women. The weeks when she is with us are rough and there are relationships that are strained and sore afterward.
We do it. We keep doing it after the funding is gone. We bake what we’ve figured out into clinic procedures, position qualifications. It’s not about us individuals, our emotional reactions, anymore. We went beyond ourselves to build a better system.
We did what we could to level the erring field without limiting the heavy labor to the women of color who were involved.
Given that Mizrahi may be Too Big To Fail, here’s my (unsolicited) action plan for RespectAbility:
- Do not put Mizrahi in charge of the action plan.
- Do not put Mizrahi on the team in charge of the action plan.
- Accept that Mizrahi’s leadership position is another ethical hazard waiting to happen, and could be in conflict with the mission of the organization. (When reducing disability stigma and advancing employment best practices are part of your mission, your President’s ableist statements and expectation of unpaid labor from women of color with disabilities constitute conflicts.)
Yup, that’s the plan. You’re the board. Figure out the action plan for the organization.
Too drastic? Way harsh?
awkward necessary to say: Mizrahi is an affluent white woman executive whose manner in asking for help was that of someone Summoning The Help. The very people she had just offended. And when disabled women of color didn’t come a’runnin’, she was publicly resentful. That behavior was out of bounds.
- It is not the job of women of color with disabilities to educate a white, affluent executive with a disability about racism.
- If it is a job for women of color with disabilities, pay them for it. Budget for it.
- If it’s not a job, then be honest and admit it’s not a serious commitment.
In 2016, How To Relate To People Who Don’t Look Like You is an essential qualification for any job — paid or unpaid — in disability rights. Period. If you’re not prepared, it’s on you to get prepared.
It’s not quick or easy to truly understand intersectional oppression, nor does it make you perfect. It makes you a better imperfect person. I know because I was willing to do the work.
So. Get to work.
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’!”