Tag Archives: disability

REVIEW: A Midsummer Night’s Dream at The Seeing Place, NYC

Pictured: The poster for the show depicts the silhouette of two women, facing each other closely, with a rainbow-colored rose covering where their lips meet.

While this pandemic is, as the youngsters say, for the birds (my imaginary youngsters are all living in 1943), one of its silver linings is the accessibility of performances all over the world. As a Californian, I would have had no access to a production in New York. Now it’s as easy as clicking a link.

Artists always find a way. You can’t stop art, and the supposed “death of theatre” has been breathlessly reported many times, with the cause of death listed first as radio, then film, television, and, of course, the internet. Art is life, and life– according to the sage Jeff Goldblum– finds a way.

So I was excited to see what The Seeing Place Theater in New York had done to make Midsummer, often a very physical show, work on the Zoom platform. I know many people decry Zoom-based theater and long for a return to in-person shows. I long for in-person shows as well, but the creativity artists are showing as they play with this new format is, honestly, delightful.

Pictured; the logo of The Seeing Place Theater, white lettering on a black background, accompanied by a white S-curve with a blue eye in both parts of the curve.

The Seeing Place’s Midsummer is a small-cast show with each actor playing multiple roles. TSP utilizes animation, designed by Erin Cronican and Brandon Walker, as costuming, and while its execution was not always perfect, it was a lot of fun to see. The standout effect was Bottom’s animated ass head, which was a lot of fun. The fairy ensemble– Moth, Mustardseed, Peaseblossom– were animated fairies with the actors’ faces. Major character fairies like Titania & Oberon had animated effects that gave their eyes, hair, and/or faces magical elements. Again, the technology wasn’t perfect, but I would have killed to have the ability to make lightning shoot out of a fairy’s eyes in any of my live productions of Midsummer.

The actors appear in individual squares against a magical forest background. Puck is wearing a black lace shirt and Oberon has lightning shotting out of his eyes. Titania wears a flower crown. Two of the three minor fairies appear as tiny, flying fairies with the actors' faces. The third is human-sized with digital fairy makeup.

Pictured from left to right: Top row: Jon L. Peacock as Puck, Erin Cronican as Peaseblossom, and William Ketter as First Fairy. Bottom row: Weronika Helena Wozniak as Moth, Laura Clare Browne as Titania, and Brandon Walker as Oberon.

One thing that’s challenging for some actors is code switching from theater acting to camera work, especially the monologue-like format of Zoom theater. Most of the TSP actors had this down, but the star of the show was co-director Erin Cronican, who played both Helena and Peter Quince. Her character creation and immaculate comic timing were a real treat to watch. I was constantly engaged by Cronican’s performance, and found myself laughing out loud alone in my Ready Room at Cronican’s well-crafted and deeply detailed comic moments. Cronican’s Peter Quince monologue at the top of the “Pyramus and Thisbe” play-within-a-play is one of the best renderings I’ve seen in years. Cronican knows exactly what’s funny about every moment of this play, and serves it up to her audience masterfully. Other standouts were William Ketter’s blustery and egotistical Demetrius, Brandon Walker’s fatuous Theseus, and Laura Clare Browne’s joyful Titania. The adorable Ellinor DiLorenzo had some very nice moments as Hermia as well, but there were some moments she seemed to lose focus, which, admittedly, is really easy to do in this new format, where actors are juggling technology in addition to acting directly to a camera. Perhaps the greatest challenge of this kind of acting is to maintain your focus on the camera when your scene partner is (generally speaking) below it. But overall, the cast was solid and enjoyable to watch.

I’d like to tip my hat to stage manager Shannon K. Formas, who made the tech smoother than most Zoom performances. She had a lot on her plate and pulled it off seamlessly.

The LGBTQ+ theme was evident in the Hermia/Lysander love story, as both were cast with women. Some of the minor fairies and Puck were given androgynous looks, and the actor playing Puck, Jon L. Peacock, identifies as nonbinary. Pronouns were included in the program, which should be industry standard. Importantly, this production is a benefit for the Ali Forney Center for homeless LGBTQ youth.

The actors appear in individual squares against a nighttime forest background.

Pictured: Top row: William Ketter as Demetrius and Erin Cronican as Helena. Bottom row: Weronika Helena Wozniak as Lysander and Ellinor DiLorenzo as Hermia.

One of the main reasons I was interested in this production is that two of the actors– Cronican and Ketter– are people with disabilities, and PWDs are deeply underrepresented in theater. Both of them have invisible disabilities, often glossed over in discussions of disability outside the PWD community. In a culture in which PWDs are relentlessly bombarded with accusations of “exaggerating” for “attention,” “drugs,”or “special treatment,” and often go through months (or even years) of doctors insisting symptoms are “imaginary” until finally running the right test and landing on the correct diagnosis, those whose disabilities are invisible face a very specific kind of cruel marginalization.

The fact that the disabilities of the actors aren’t visible doesn’t make their identities as PWDs any less real or important. What I appreciated most about Cronican and Ketter in this show is that their disabilities aren’t the focus of the story. When PWDs are represented in the theater, it’s almost always a story about disability in some way, and cast with an able-bodied actor. PWDs haven’t even reached the most basic level of inclusion in theater, let alone equity. Disability is still almost entirely ignored even just in discussions of diversity, equity, and inclusion. Including actors with disabilities in roles that are not defined by disability, in a play that isn’t about disability, is a refreshing change.

Overall, this is a very enjoyable production of Midsummer, and it couldn’t be for a better cause.

A recorded version of The Seeing Place’s Zoom production of A Midsummer Night’s Dream is streaming through September 5th. Click here for tickets. Click here for more information about TSP’s 2020-21 season.

Want me to review your Zoom production? Email bittergertrude@gmail.com.

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Autonomy and Disability on Stage: The Seeing Place’s Midsummer

Pictured: The poster for the show depicts the silhouette of two women, facing each other closely, with a rainbow-colored rose covering where their lips meet.

The Seeing Place’s production of A Midsummer Night’s Dream plays August 28 at 7PM EDT and August 29 at 3PM EDT. For tickets, click here.

Yesterday I sat down (virually) with Erin Cronican and William Ketter of The Seeing Place Theater in New York to talk about their upcoming production of A Midsummer Night’s Dream, opening tonight! The production is, of course, on Zoom, so wherever you are, you can still grab a ticket and attend. I’ll be attending this afternoon’s performance (7PM Eastern; 4PM Pacific) and doing a longer write-up later, but I wanted to give you some highlights about why I’m excited to see this piece and give you a chance to see it with me before the piece comes out. (If not, one of the live performances will be recorded and posted online after the show closes).

First of all, it’s a benefit production for homeless LGBTQ youth. To quote their site: “This play is being presented as a benefit for The Ali Forney Center, a non-profit organization dedicated to protecting LGBTQ youths from the harms of homelessness and empower them with the tools needed to live independently.” What’s not to love about that?

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The Ali Forney Center is located in New York. Learn more about them by clicking here

But here’s what really hit home for me: This production of Midsummer is part of their 10th season, themed around “The Body Politic.” They’re presenting Midsummer as a story about the fight for autonomy and self-determination.

In this production, Lysander and Hermia are a lesbian couple, foregrounding the difficulties faced by LGBTQ youth in accessing the community acceptance needed to support self-determination. You can only determine your own destiny if people with power are not hostile to that destiny and using their power and privilege to disrupt it.

Hermia is given the choice to marry the man her father chooses, become a nun, or die. And while this play is 400 years old, many LGBTQ youth are forced into similar choices. Some legal progress has been made, but LGBTQ youth are still 140% more likely to experience homelessness than their peers. Parents are still throwing their transgender kids out into the street, or abusing them because they can’t perform their gender or sexuality according to parental specifications, driving LGBTQ youth to run away to seek a safer environment. The Ali Forney Center has a waiting list of over 100 kids a night just looking for a safe place to sleep.

While LGBTQ-focused productions of Midsummer are admittedly no longer rare, what is rare is The Seeing Place’s understanding that these issues are intersectional in casting two actors with disabilities: Erin and William.

ErinCronican2

Erin Cronican is also the Executive Artistic Director of The Seeing Place. (Source: seeingplacetheater.com)

People with disabilities, especially PWDs whose intersectional identities include other marginalized aspects, such as queer PWDs and BIPOC with disabilities, face enormous roadblocks to bodily autonomy and self-determination. Youth with disabilities must struggle against an ableist society that relentlessly seeks to infantilize PWDs, deny our self-determination, deny our autonomy, and frame us as sexless beings whose primary purpose is to provide a framework for able-bodied people as they perform “generosity” and “gratitude.”

Disability is routinely– even aggressively– shut out of discussions of privilege and marginalization. In my last teaching job, I pointed out that we had disability mentioned as part of our “commitment to diversity,” but that we had not even done any information gathering around disability, let alone begun anything approaching equity and inclusion work. Instead of committing to beginning that work, they responded that they would just remove disability from the list.

Disability is almost invisible in discussions of diversity, equity, and inclusion, exacerbated by the fact that PWD representation in media is almost nonexistent, and when we do appear, it’s mostly inspiration porn.

So I’m very excited to see how they approach this play with these issues in mind! I’ll be posting a longer write-up about it early next week. See you at the theatre!

Theatres! If you would like to me write about your Zoom production, contact me at bittergertrude@gmail.com. 

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Disability Cosplayers

Disability Awareness Month ended on July 31, but I have one more thing I need to mention: Disability Cosplayers.

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Not this. This guy’s epic. Follow him on the Twitter machine at @aracknoid3 and while you’re at it, follow the fine folks at @blerdover who were responsible for this photo, which made my whole damn day. Blerdover celebrates epic Black nerds like this badass. (Description: A man using a stand-up wheelchair is wearing a gorgeously crafted Iron Man/merfolk mashup costume.)

You know what I’m talking about: people who pretend to be disabled to take the accommodations that give PWDs access to public areas, events, and services.

One common aspect of this is misuse of accessible parking spaces. Of course I don’t mean the ableist notion that people use blue spaces who don’t “look disabled.” People with invisible disabilities exist and need those spaces. I mean the people who knowingly misuse the accommodation. When all the blue spaces are taken in a lot, I can’t park. I don’t need a space right by the door; I need a space with extra room to get in and out of my car. Parking is a minor issue, and one rife with privilege, since many of us cannot afford to own and maintain a car or adapt one for our particular disability. Yet it’s part of the endless stream of ableism we encounter daily that conveys to us that we are invisible and unimportant.

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Description: Two tweets are pictured. The first one is from @DanielLaw1998 and says: “Disabled parking should only be valid during business hours 9 to 5 Monday to Friday. I cannot see any reason why people with genuine disabilities would be out beyond those times.” The tweet in response is from @JenLRossman and says: “We’re disabled, Daniel, we’re not werewolves.”

There are hundreds of ways in which able-bodied people demonstrate that they are only willing to provide accommodations as long as it’s convenient for them and as long as they don’t believe the accommodation will increase their own comfort. Able-bodied people will place their comfort over our need so often that people with disabilities must fight every day for the disability accommodations supposedly reserved for us.

For example, ADA-compliant bathroom stalls. These are fairly new. The ADA was signed into law in 1990; prior to that, businesses were not required to provide them. Able-bodied people always say they’ll “only be in there for a minute,” but speaking as someone waiting outside the only accessible stall in an otherwise empty restroom listening to people cajole small children into using the toilet for a solid 20 minutes while I hold it, I can assure you that “a minute” is relative. Those stalls were created to give PWDs access to the public spaces able-bodied people were accessing all along. Able-bodied people take them because the extra space is more comfortable and convenient, not because they require an accessible space.

Having to wait for a bathroom stall is, of course, a minor inconvenience in most cases. But the idea that necessary disability accommodations can be withheld from people with disabilities if an able-bodied person simply wants them is the larger issue. This entitlement is so commonplace that it’s is a feature of our everyday lives. The widespread problem of disability cosplay is wholly a creature of that entitlement.

No one polices who uses which bathroom stall, so able-bodied people, by and large, feel free to just take them without pretense. But in many cases, accommodations are accessed through a human gatekeeper. This has, since the passage of the ADA, given rise to the disability cosplayer.

One of the stereotypes people with disabilities have to fight endlessly is that we’re entitled and demanding, and we don’t actually need the accommodations we use. Every disability cosplayer angrily demanding that they be given a disability accommodation they do not need makes it that much more difficult for people with disabilities to access accommodations we do need.

Every PWD has stories about able-bodied people disbelieving us when we say we need something. Most PWDs have a story about being told we’re “faking it,” or that our mobility devices are just “a crutch” (ironically) and that we would “get stronger” without them. We’re told that we would be “better at managing pain” if we stopped taking our pain medications and just “learned to deal with” disabling pain. Ambulatory wheelchair users are routinely scolded, mocked, or even shouted at by able-bodied people accusing them of “faking” because they stood up to reach something in a store, or because they walked a few steps.

abledsareweird-hashtag-350x350

Description: A tweet from @eirpaC says: “I was an ambulatory wheelchair user for a year in high school, while I awaited spinal surgery. A peer told me I would get better if I just took the stairs, and she tried to block the elevator entrance several times. We were on the fifth floor.”

People with disabilities are routinely gaslit by healthcare workers who insist we’re lying or mistaken about our own bodies, our pain levels, our responses to treatments, or our needs. Nearly every PWD has heard at least a few of these:

  • “You don’t need that (test, treatment, medication)”
  • “It doesn’t hurt that bad”
  • “You just want drugs”
  • “Stop feeling sorry for yourself”
  • “You couldn’t have had that reaction”
  • “You just need to exercise”
  • “You just need to lose weight”
  • “You just need a more positive attitude”
  • “It’s all in your head”

And of course the famous “Are you sure?” accompanied by a skeptical smirk. The nurses and doctors who believe us and treat us with respect and dignity are worth their weight in platinum.

Being disbelieved by family, friends, healthcare workers, and even strangers is one of the most commonly shared experiences of PWDs, especially women and BIPOC with disabilities. When an able-bodied person cosplays disability, it makes our lives that much more difficult because it confirms the suspicions of able-bodied people that we’re all just “faking it.” Even people with obvious physical disabilities or clear diagnoses are told we’re “faking it” about some aspect of our disability– the level of pain we experience, the things our bodies can or cannot do, or our experiences of ableism. There will be people who will contact me after reading this piece to tell me I’m “faking it” about how often we’re told we’re “faking it.”

The newest disability cosplay comes from able-bodied anti-maskers. They’ve even formed a little club that issues laminated cards that pretend to be “official”:

ftba-card-w-watermark.png

The cards say:

“FACE MASK EXEMPT CARD. I AM EXEMPT FROM ANY ORDINANCE REQUIRING FACE MASK USAGE IN PUBLIC. Wearing a face mask posses (sic) a mental and/or physical risk to me. Under the Americans with Disability (sic) Act (ADA), I am not required to disclose my condition to you. Department of Justice ADA Violation reporting number: (800) 514-0301. If found in violation of the ADA you could face steep penalties. Organizations and businesses can be fined up to $75,000 for your first violation and $150,000 for any subsequent violations. DENYING ACCESS TO YOUR BUSINESS/ORGANIZATION WILL BE ALSO REPORTED TO FTBA FOR FURTHER ACTIONS.”

Also on the card is an official-looking seal that purports to be from the “Freedom to Breathe Agency,” with a web address. No such agency exists and the web address leads to a broken website. (I used a picture clearly labeled “FRAUD” for obvious reasons; that doesn’t appear on the original.)

This bit of disability cosplay is particularly egregious because people with disabilities are at higher risk of complications from Covid-19, and are protected from deadly infection by responsible public behaviors like social distancing and mask-wearing. There are very few disabilities that preclude mask-wearing, and those who truly cannot wear a mask are relying on the rest of us to keep our masks on. Your mask prevents you from infecting other people by catching the droplets that come from your nose and mouth. This is especially important with Covid-19 as so many people are asymptomatic in the early stages of infection, and some apparently remain asymptomatic, although we have no idea why, making us all possible asymptomatic carriers. The failure of the US to provide adequate testing means that people are waiting days or even weeks for test results when they can even access a test, making it even more difficult to contain the spread as people go about their daily lives awaiting results.

The internet is full of videos of people throwing tantrums as they insist they have a disability that prevents them from wearing masks while the poor, underpaid store worker is just trying to enforce store policy and commonsense public health protections. People pretending to be from the non-existent “Freedom to Breathe Agency” are even intimidating store workers with lies about how they can be personally held liable for enforcing store mask policy. Please note that every single one of these disability cosplayers who claim to have an unnamed “breathing problem” are breathing just fine through their lengthy, shouted tantrums.

And every single one of these disability cosplayers is making life more difficult for people with disabilities, especially the very few people who genuinely cannot wear a mask and the people with real respiratory issues, such as asthma and COPD, who are at enormous risk of complications from coronavirus and are relying on the rest of us to supplement the protection their masks give them by wearing our own.

If people want to throw a public tantrum about wearing garments, whether it’s safety equipment like a mask or a hardhat, or pants, please leave us out of it. It’s difficult enough to get the accommodations we need.

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Disability & Covid-19

It’s Disability Awareness Month, and in the middle of this pandemic, at the 30th anniversary of the ADA, there’s never been a more important time to center people with disabilities. Unfortunately, the national discussion around Covid-19 has been marginalizing, rather than centering, PwDs.

mask.rebirthgarments

All the images in this post promote independent mask makers. This cute design has a window, making it easier for deaf and hard-of-hearing people to understand you! The maker is Rebirth Garments on Etsy.  (Pictured: A smiling person with very short black hair, wearing colorful garments and a face mask with a plastic window through which their mouth can be seen.)

We are not disposable. Although little is still known for certain about Covid-19, people with chronic illnesses and certain disabilities appear to be at greater risk. “It’s mostly just old people and people with other conditions,” is tossed out by people looking to shut down concerns. Some prominent conservatives have even gone as far as to say that the elderly and/or people with disabilities should be sacrificed to “save” the US economy.

Perhaps the worst aspect of this is around pediatric cases. In news stories about the children who have died, “[Name of child victim] had underlying conditions” is featured prominently whenever it’s applicable. I’ve even seen it on a line by itself. “Reduce your concern,” it seems to say, “This child was disabled, so it’s not as bad.”

PwDs and families of PwDs are facing the very real possibility that our access to life-saving medical care will be impacted by ableism. In areas of the country overwhelmed by serious cases of Covid-19, hospitals face the unpleasant task of triage, and while disability is not supposed to be a concern, ableism– like racism, like sexism, like transphobia, like fatphobia, like every other kind of bigotry– is often expressed in implicit bias. We believe we have “good reasons” for a decision that, when more closely examined, are actually the result of bias. When there’s one ventilator left in the hospital and three patients who need that ventilator, “quality of life” and “best chance for a full recovery” can knock a person with a disability out of consideration.

Both the widespread sentiment that the danger of reopening schools and businesses is overstated because most of the people who will die have pre-existing conditions and the implicit — and explicit— bias at work in triage reflect systemic ableism. Our lives are not just considered less important than the lives of the able-bodied, our lives are considered less important than the economy. Which means, at its heart, that our lives are less important than protecting the wealth of billionaires. It’s not about “getting people back to work,” as the US has ample resources to temporarily provide income to people who must stay home and childcare for people who cannot. We just choose not to because it would require raising taxes on millionaires and billionaires.

The lives of PwDs are considered a more acceptable sacrifice than 1% of the wealth of billionaires.

Our lives are as valuable and precious as the lives of able-bodied people. We will not be sacrificed so you can “reopen the economy” and hold in-person classes, football games, or two-for-one jello shot nights at McCovid’s. You cannot have our children to sacrifice on the altar of capitalism.

masks.mverse

The MVerse is making gorgeous silk masks. (Pictured: Five colorful, patterned face masks arranged in a fan pattern.)

The other group Americans seem more than willing to sacrifice for the economy are people of color.

Two of the most significant conditions correlated with serious Covid-19 complications are asthma and cardiovascular issues, both of which are over-represented in BIPOC communities, especially Black and Indigenous communities. The impact of systemic racism on health has been studied for years, yet there is still widespread white resistance to the fact that racism is a public health crisis. White health– like able-bodied health– is considered more valuable and important.

Anything that primarily impacts BIPOC or PwDs is not a “crisis”; it’s a “special interest.”

Too many able-bodied white Americans do not consider disabled lives or Black lives important enough to protect. We were all in favor of social distancing and shelter-in-place until it became clear that the higher risk was borne by people with disabilities and people of color. Immediately, conservatives peeled off and became stridently insistent that the pandemic was a hoax, masks were “mind control devices,” and every healthcare provider and scientist around the world were somehow lying for “profit.” Suddenly allowing people to die to strengthen the economy was an acceptable sacrifice.

People with disabilities:

If you are a BIPOC PwD, you face all of these same barriers at twice the intensity.

BIPOC, especially Black and Native people, are much more likely to live in poverty due to generations of aggressive economic disenfranchisement, making it more difficult to access medical care. When they do access medical care, they face enormous bias in the healthcare system. Both Black and Latinx people are less likely to have their pain properly treated in emergency departments and are less likely to be believed when self-reporting symptoms.

Black people in particular face shocking levels of bias and discrimination while seeking medical care.

  • Almost half of medical students surveyed in 2016 reported believing that Black people do not feel pain as acutely as white people, have thicker skin than white people, and have fewer nerve endings than white people.
  • In 2015, another study found that Black children with appendicitis were far less likely to be given pain relief in the Emergency Department than white children.
  • In 2017, the publisher Pearson was forced to pull a popular nursing textbook when a page teaching racist stereotypes was posted online. The text claimed, “Blacks believe in prayer and the laying on of hands to heal pain” and “report higher pain intensity than other cultures.”
  • While overall maternity mortality rates in the US are higher than any other developed nation, Black women are three times more likely to die from childbirth complications than white women.

BIPOC people with disabilities, especially women, face systemic barriers to healthcare that make their ability to survive any health crisis, Covid-19 or otherwise, extremely difficult.

mask.consciouschange

This little cutie is wearing a mask from Conscious Change, a Black-owned Etsy shop.  (Pictured: Adorable Black girl with pigtails wears a white t-shirt that says “Black Girl” in black cursive and a black face mask that says “I Matter” in white below a white heart with an black, upraised fist.)

Being a BIPOC PwD is an especially potent intersectional identity because white supremacy measures the worth of BIPOC lives by how useful they are to the white supremacist narrative: Are you making money for white people? Are you appropriately grateful to your white benefactors for the opportunities you’ve been “given”? Do you refuse to participate in protests against racism, including non-violent protests like taking a knee? Are you “happy” or “angry” and “rude”?

Nowhere is this more robust than in the white understanding of Black people. White people see the existence of Black people as being about white people. Every Black event, movement, slogan, or group is criticized bitterly if it does not center whiteness. If you doubt this, remember that they can’t even say “our lives matter” without white people angrily denouncing them as “racists” and responding with “white lives matter,” “white lives are better,” “only white lives matter” and support for white supremacy.

The angry and even violent white backlash to Black people publicly stating that their lives matter, combined with the widespread ableist belief that the lives of people with disabilities are less valuable, means Black PwDs face some of the most virulent and insidious bigotry in the country at the very moment when the nation is hotly debating whether we should sacrifice American lives to reopen schools and businesses.

mask.hipfruit

The Black-owned Etsy store HipFruit has a wide variety of masks, including both floral and BLM designs. (Pictured: A Black woman with long, straight hair and an off-the-shoulder top with navy and white stripes is wearing a face mask featuring white flowers on a black background.)

Government Apathy. This pandemic has highlighted the brutal impact of systemic ableism and systemic racism. Yet, as more and more people suffer, die, or survive with long-lasting medical complications, the government is less and less interested in providing relief. The Trump Administration, aided in large part by their ghoulish GOP allies in Congress, is insistent that unemployment and disability should be slashed, funding for Covid testing and tracing should be eliminated, and the CDC budget reduced in addition to pulling out of the World Health Organization. The press heaps praise upon Trump for wearing a mask in public and for making a speech without a single dangerous lie while his inaction and incompetence have caused the deaths of over 140,000 Americans (and counting).

The pandemic has put a spotlight on some pre-existing inequities. But what we choose to do about those inequities is the critical question. Thus far, we seem content with nothing better than comforting able-bodied white people with narratives like “People of color are at higher risk” and “People with underlying conditions are at higher risk” while half the nation insists that our deaths are irrelevant if the economy rebounds.

When you say, “Black Lives Matter,” please remember that some of those Black lives are disabled lives. When you say, “We should reopen schools and businesses because most of the people who die have underlying conditions,” remember that what you’re really saying is “the deaths of PwDs, especially the BIPOC PwDs at the highest risk, are an acceptable sacrifice to maintain billionaire wealth, since we can’t expect them to pay higher taxes for a few years.”

In a nation where months of conservative propaganda has resulted in 31% of people refusing to wear a mask regularly to protect others, , it’s impossible to predict just how deadly this pandemic will get in the US before we have a vaccine– which anywhere between 27% and 50% of Americans say they will refuse, thanks again to propaganda, this time on the standard sources for antivax hooey on the fringe left as well as the right.

There are many things in life that are “risky,” and “acceptable risks” are part of life. In this case, however, we’re not talking about “risk.” We know this virus is deadly; we know a certain percentage of people will die or suffer long-term debilitating consequences. In this case, “acceptable risk” means “it is acceptable to me that these people will die.”

We refuse to be your “acceptable risk.” Allies, accomplices, loved ones: stand with us. And we all need to remember that BIPOC PwDs are bearing the brunt of every aspect of this crisis.

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Anti-Ableism 101: How to Be a Better Ally

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Image: The standard disability icon, but carrying a flaming torch, and with this written on the wheelchair: Make is accessible or burn it down. Buy this image on a variety of products at the Etsy shop NecroticPixies

Happy Disability Pride Month!

July is the month people with disabilities express pride in our identities and accomplishments, and work to make the world a more equitable place for all PwDs. I’ll be devoting July’s posts to discussing disability and the able-bodied allyship we need from you. This post is designed to cover a few of the basics.

THESE ISSUES ARE SYSTEMIC. The vast majority of people who say and do ableist things just haven’t yet examined the ways in which systemic ableism has impacted their beliefs and understanding. One key thing to remember in work around allyship is this:

When you’re feeling defensive, when that “BUT I’M NOT ABLEIST, I DIDN’T MEAN IT THAT WAY, I’M A GOOD PERSON” rises in your chest, it’s the X that marks the spot: Dig Here. There is something to find. It’s OK to be uncomfortable. Sit in the discomfort. Think honestly and fearlessly about the issue at hand. Instead of resisting them, allow defensiveness and fragility to be your guides. When they occur, stop. Breathe. And then DIG. It’s not your fault our ableist society put those ableist thoughts in your mind, but it’s your job to honestly examine them and root them out.

If a PwD has told you that something you’ve said or done is ableist, thank them. It took an enormous act of bravery to be honest with you because so many able-bodied people react defensively and even angrily when told that their words or actions were ableist. Honor the trust they’ve shown in you by doing the work required. Is it easy? No. But honest self-examination is one of the central projects around learning how to be a better ally.

EXAMINE YOUR EXPECTATIONS.

  • Not every disability is visible. It’s not allyship to yell at someone who “seems fine” when they park in a space reserved for PwDs. There are numerous invisible disabilities that can make walking painful, difficult, or dangerous, and you are more likely to be shaming a PwD than fighting on our behalf. And there are many aspects to disability that aren’t about mobility. Learn about invisible disabilities.
  • Disability is not all or nothing. Ambulatory wheelchair users exist. Many people who use wheelchairs can stand and walk under certain circumstances. For example, I usually walk with a cane, but if I’m going to a museum or theme park, I will use a wheelchair because I can’t walk for very long. The ableist jokes and memes (“It’s a miracle!”) about ambulatory wheelchair users are an example of disability binarism— the concept that disability must be all or nothing. Either you can walk fine, or you cannot walk at all. Either you can see well, or you cannot see at all. This concept does real harm to people with disabilities.
  • Do not assume you know what we need. Once I taught at a school that rented space from a church. I parked in one of the blue spaces until the church complained that all the blue spaces were “theirs.” Rather than wrangle with them, the school generously provided me with a parking space right near the building entrance. The only problem: I wasn’t using the blue space because I needed to be close to the entrance; I was using the blue space because I needed more room to get in and out of my car. No one had asked me what I needed; they just assumed they knew. Ask us what we need.
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Image: An illustration of flags that say, “Nothing About Us Without Us” against a dark blue backdrop with many small icons representing various disabilities in light blue. This appears to be an adaptation of a Women’s March protest poster by Jennifer Maravillas, but if you have more specific information, please let me know. 

NOTHING ABOUT US WITHOUT US. If you’re creating disability-related policy, planning a public event, creating a product, writing a character with a disability, or educating yourself about PwDs, you must center the voices of PwDs in your work. I know this sounds like an obvious piece of advice, but it’s not often followed. The majority of public policy, corporate policy, event planning, and disabled character creation happens with little or no input from PwDs. When we do give our opinions, we are frequently shut down. I’m just one person, but I’ve been told all of the following when attempting to create a more disability-friendly workplace:

  • We don’t need that; we do great with disability
  • Maybe we’ll include disability in our DEI work in the future, but not right now.
  • People know that our program is not fully accessible. They can just choose to go elsewhere.
  • This area is occasionally used by able-bodied people, so we can’t make it disability seating.
  • But we’re not required to by law.
  • It’s too difficult.
  • It’s too expensive.

PwDs have written reams of material about making spaces, programming, events, products, and characters more accessible. There are hundreds of PwDs, myself included, who offer their services as disability equity and inclusion consultants. There is no need to guess, assume, or imagine what we need. “Nothing about us without us.” Just ask, and when we tell you, believe us.

DO NOT GLORIFY “TOUGHING IT OUT.” Once I heard a colleague say about a student with a mobility disability, “They did great! They walked for hours and never once complained. I’m so proud of them!”

This stood out to me because it’s an excellent example of the prevailing attitude of able-bodied people: It’s OK to be disabled, but it’s not OK to talk about it or inconvenience able-bodied people with our needs. It’s OK to come along, but you must never tell able-bodied people that you’re in pain or that you need an accommodation. This “push through pain; never show weakness” is one of the cornerstones of American ableism. I’ve written about it before, so I won’t go into detail here, but suffice it to say, it’s ableist to glorify pretending that disability doesn’t impact us.

HANDS OFF. You would be astonished how often people with visible disabilities are grabbed, touched, pulled, or pushed. Apart from the obvious– never touch another person without their consent– you are more than likely not helping. Any time you suddenly grab another person without warning or consent, you risk pulling them off balance. I walk with a cane, and when you grab my arm to “help” me walk, it destabilizes me and makes walking more difficult. People who use wheelchairs all have stories about able-bodied people who lean on their chairs, try to sit on them, or even grab the handles and start pushing them in random directions, assuming they know where the PwD wants to go.

Always ask us what we need.

And while you should never pet or feed any domesticated animal without permission from its human companion, this is especially important with service animals. We don’t come to your place of business and pet you or shove an eclair in your mouth while you’re trying to give a presentation; don’t pet or feed a service animal while it’s trying to work.

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Image: A raised black fist with the infinity symbol on the wrist and thumb; to the right, the words “Black Disabled Lives Matter.” Source: Amazing artist Jen White Johnson. Go spend money on her stickers, prints, and other cool stuff. 

BLACK LIVES MATTER. Remember that these issues are intersectional. Our experience of disability is enormously impacted by other aspects of our identities. Consider the additional impact of racism, sexism, homo/transphobia, classism, fatphobia, Islamophobia, antisemitism, and other forms of oppression as they interact with ableism. This is why it’s key to develop your allyship by reading the work of a wide variety of PwDs. Your ally reading list for Disability Awareness Month 2020 should lean towards reading the work of Black PwDs. One of my favorites is Crutches and Spice, run by Imani Barbarin, but there are dozens of excellent sources out there!

LANGUAGE. Refer to us as “people with disabilities” (“PwDs”) in the aggregate. Individuals may have different preferences, but in the aggregate, remember that we are people with disabilities, people who use wheelchairs, people with invisible disabilities, etc. Put people first! Please avoid “the handicapped” or cutesy euphemisms like “differently abled,” “special needs,” or “handi-capable.” If an individual has a different preference, use that! It’s not up to able-bodied people to tell a PwD they’re “wrong” for using a different term.

It’s also important to stop using ableist slang terms. “Lame” and “dumb” meaning “bad” are two of the most prevalent now that it’s common knowledge that “r****ded” and “r****d” are ableist slurs. (Also avoid variants of “r****d” like “fuckt**d” and “libt**d,” although it seems implausible that anyone who would use “libt**d” cares about people with disabilities.)

Two more critical terms to avoid are “blind” and “deaf” as metaphors for ignorance. (You can go back through this blog and find examples of my own unthinking, ableist use of these terms.) People with sight-related and/or hearing-related disabilities are not any more or less likely to be ignorant than anyone else. Another troubling trend is the use of blindness as a metaphor in books, films, TV, and theatre. Actress, teacher, and disability activist Marilee Talkington writes powerfully about this in her critique of José Saramago’s book, Blindness, now a sound installation art piece in London:

“The book is a despicable depiction of humans who have suddenly gone blind being herded into and imprisoned in an asylum where they devolve into animalistic killers, lose all humanity and sense of self, all while being ‘cared for’ and ‘lead’ by SIGHTED individuals. . . . Stop using us (BLIND folx) as your METAPHOR for the disintegration of humanity, for your ignorance, for the world’s chaos, for your lack of goodness, your lack of ability to adapt, and for the emptiness of your own soul.”

Disability should not be used as a metaphor for moral impairment. 

THERE’S SO MUCH MORE. My post barely scratches the surface, but I hope it’s enough to get you started thinking about disability allyship!

NEXT WEEK: Disability and Covid-19.

Want more? Become a Bitter Gertrude patron & get access to Bitter Gertrude Book Club, a bimonthly post with reading recommendations about BG posts, current events, and writers to keep on your radar.

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Trump Is Unwell. How We Talk About That Matters.

Donald Trump’s obvious physical and cognitive decline over the past few years has been thoroughly documented.

His slurring and difficulty with language:

The worsening weakness on the right side of his body:

2017:

2020:

His inappropriate behavior:

His problems with balance:

This has led to a great deal of concern. The man with the nuclear codes clearly has a serious neurological problem that the White House is hiding from us.

Part of Trump’s brand, however, is his narcissism and self-aggrandizement. He’s not just healthy; he’s the most healthy president ever. He’s not just smart and level-headed; he’s a “very stable genius” with “unmatched wisdom.” This insistence on presenting himself as an Übermensch when he is very clearly frail is an irresistible target for his critics. In the past few days since Trump’s alarming performance at the West Point graduation, hashtags such as #TrumpWearsAdultDiapers and #TrumpIsUnwell are burning up Twitter.

This is a tricky issue. On the one hand, mocking someone for being unable to walk or run is ableist. People with difficulties in mobility, speech, movement, and bladder/bowel control are full human beings who should not be mocked for their disabilities. When we use disability as a club to beat a politician we dislike– even a monstrous one like Trump– the people who bear the brunt of that cultural ableism are not wealthy white men. Systemic ableism always falls hardest on people experiencing other types of systemic bias– racism, sexism, transphobia.

We cannot both be horrified at Trump’s mockery of Serge Kovaleski and also gleefully mock Trump’s physical and neurological decline.

And yet.

Some people have equated this with people in the LGBTQ+ community leaping on the “Lady G” story about Lindsey Graham. and some of my fellow PwDs are leaping on the #TrumpIsUnwell trend. When a man with extreme cultural and political power lies about belonging to a marginalized group, people notice that hypocrisy. And when that man repeatedly and aggressively uses his power to harm the marginalized group he pretends he doesn’t belong to, the hypocrisy moves from a personal foible to a public danger. Distancing yourself from something by attacking it is the oldest of old tactics.

Graham (along with every other virulently anti-gay political and religious leader like this man, this man, this man, this man, and these people) will not firmly establish himself as “straight” by working to demolish LGBTQ+ rights, although he will continue to try, and real people will continue to be hurt. Likewise, Trump will not magically become young and healthy again by mocking people with disabilities and crushing disability rights and funding, but he will continue to try, and real people will continue to be hurt.

Men like Lindsey Graham and Donald Trump, stuck within toxic masculinity, will do anything to avoid appearing “weak.” Trump has, through his words and actions, very clearly demonstrated that he associates being disabled with being “weak.”

The belief that a gay man is “weak” or a man with disabilities is “weak” is bound up in sexism as much as it is bound up in homophobia and ableism. Toxic masculinity labels certain things traditionally “feminine,” like sleeping with men or needing help with physical tasks, and therefore sees them as minimizing masculinity, as weak and laughable. Toxic masculinity’s homophobia and ableism are inextricably bound to its sexism and misogyny.

But in all the public discussion of “Lady G,” people were careful to point out that there’s nothing wrong with Graham hiring male escorts, and nothing wrong with being gay or even closeted. People were not mocking his actions. They were mocking his hypocrisy in lying about his sexuality while using his status as one of the most powerful men on earth to oppress LGBTQ+ people.

Trump refuses to admit that he’s a person with disabilities because he thinks we’re all “weak” and he doesn’t want to appear to be one of us.

This hypocrisy reveals a weak flank that presents an irresistible target. “You hate and attack who you are,” the thought goes, “so we will never stop mentioning it.”

To mention it, however, does not necessarily mean to mock it. 

It’s horrific to mock someone for needing help down a ramp, slurring words, or being unable to lift a glass. You think I don’t know I can’t run, or that I have difficulty with stairs? I KNOW. So the sudden onslaught of “lol he can’t walk lol look at all these videos of able-bodied people running because people who can run are better than people who can’t lol” was like a gut punch.

And yet some of those people are PwDs, claiming that we “get to” mock Trump’s physical/cognitive disabilities due to his hypocrisy. That the hypocrisy is, after all, what we’re mocking.

But are we mocking his hypocrisy– the fact that he insists (and forces his mouthpieces to stand before the press and insist) that what we can all see and hear is not, in fact, true? Are we mocking the Trump cultists who celebrate imaginary Joe Biden or Nancy Pelosi “senility,” who celebrate cutting funding to programs for the disabled, who celebrate the mockery of Serge Kovaleski, who celebrate the mockery of a disabled child, but have an endless appetite for upholding an obviously frail Trump’s Übermensch self-image through gaslighting and lies?

Trump is one of us, but he pretends he’s not because he thinks we’re worthless and disgusting. Is that hypocrisy really what we’re mocking with hashtags like #TrumpWearsAdultDiapers?

If your answer is “yes,” then is it worth the possible collateral damage to the rest of the PwD community?

It’s overwhelmingly evident that Donald Trump– the man with the nuclear codes, the Commander in Chief–  is indeed unwell, and the White House is attempting to hide a worsening health issue from the American public. But it should also be evident that the majority of disabilities, neurological or otherwise, would not in any way impact someone’s job performance as president. The very fact that the White House is attempting to cover this up with awkwardly transparent lies is, in itself, alarming, and leads to speculation that whatever this is does indeed impact his job performance and will continue to grow worse. Trump is already much more visibly impacted by whatever this is than Reagan ever was by Alzheimer’s while he was in office. Continuing to pretend that there’s nothing wrong with the president of the United States when we can all see that there very clearly is remains the center of the problem here.

The American people should be informed of the truth about Trump’s declining health. Criticizing the lies and the coverup– and the ableism behind them– are fair game. It’s not fair game, however, to mock the impairments themselves. Trump will never see your tweet, but your friends with disabilities will. Your anti-ableism shouldn’t stop the moment you think you can get away with an ableist joke by using “punching up” as a shield.

These are attempts to minimize a powerful man by pointing out his disabilities.

Talk about the cover-up. Talk about the hypocrisy. Mock them both! Trump is ableist and sees disability as minimizing. That does not mean we need to confirm that ableism in our mockery of him. There’s plenty to mock without mocking disability.

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You’re Not OK? Glad to Hear It.

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Thanks, ableism! I’ll get right on that. (Picture shows a staircase with the words “There is no elevator to success. You have to take the stairs” placed on the steps.)

Our culture is flooded with supposedly “inspirational” messages framing nonstop work as heroic. “Never let anything hold you back,” “Go harder and achieve your dreams,” and similar platitudes permeate our culture. People with disabilities are often the targets of it– “The only disability is a bad attitude,” “Don’t call yourself disabled!” and the whole “differently abled” and “handi-capable” nonsense. The worst of these are “inspiration porn”– people with disabilities used as props to inspire able-bodied people.

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Oscar Pistorius is famous, so I feel comfortable using this, but there are numerous memes just like this using images of children and everyday people. (Picture shows Oscar Pistorius, wearing his specially designed prosthetic legs and a yellow and green racing uniform, running in a race in a packed stadium. Emblazoned in large white letters across the picture is, “WHAT’S YOUR EXCUSE?” in all caps.)

Who does it serve to pretend that any admission of limitations is a sign of laziness, personal weakness, “giving up,” and moral failure? Who does it serve to frame pushing through limitations without asking for help as the highest possible good? Who does it serve to pretend that success is the natural end result of relentless work?

Who does it serve to tell people with disabilities that the highest good we can achieve is to live as if we are not disabled?

Who does it serve to pretend you are OK when you are not, in fact, OK?

I haven’t posted since July. That’s an eight month hiatus. In that time, my husband and I bought our first house. Just before closing, my mother-in-law died suddenly and unexpectedly, collapsing in front of our son as she was taking him to lunch.  While we were moving, I was bit by a venomous spider, leaving a large, blistered wound that took weeks to heal. I had a stalker, angry about something I had written, track down and contact a number of co-workers. Five days after that, I got a call from my husband’s workplace telling me he had collapsed with chest pains and was being rushed to Kaiser in an ambulance. Shortly after he recovered, our daughter had surgery, and had complications that resulted in her calling me at work and sobbing into the phone in pain and frustration. Then I had an extremely painful back injury. Then I lost my job.

That’s not even everything, and this was all before the virus. Today is Day 11 of shelter-in-place with no real end in sight.

The past eight months have brought me the greatest turmoil and upheaval I have ever experienced. The blog has taken a backseat to all this, and I hate myself for it.

I have constructed my entire adult identity around being reliable, hardworking, and extremely productive. I have been proud of my lack of work/life balance. Even in the midst of the turmoil and upheaval of the past eight months, at a time I was hiding in the bathroom and sobbing at work, barely able to get through each day, I took just two days off. I have answered work emails in line at Disneyland. I have answered work emails at midnight. I have answered work emails from a hospital bed. Our culture is awash in “Never Stop,” “No Excuses” propaganda, and I am clearly as susceptible to that as anyone else.

Yet the price we pay for that is brutal. We shorten our lives, spread dangerous viruses, and live lives that are less full. We work 70 hour weeks for companies that lay us off without a second thought. We take on punishing “fitness” regimens that drain our time, wallets, and health. We pretend that leisure is just laziness if we’re not using that time to work on a project. We even have to make our downtime about goal-setting and achievement. Meditation apps give rewards for achievements. Level up! Get those stickers! NO EXCUSES.

Even in the midst of this horrific pandemic, there’s pressure to ACHIEVE. What are you writing? What new language are you learning? Which of the 10,000 online events are you attending? How many online events are you offering to your community? What are you DOING? Don’t just sit around online, you lazy jerk! What are you DOING?

I ask again: Who does this serve? Who benefits from the propaganda that claims that smashing our bodies, minds, and lives against the rocks of relentless labor is the greatest moral good, and that any less is a moral failing?

Who benefits from a culture that demands we never admit to limitations?

When we refuse to accept our limitations, we prop up an ableist culture that sees any physical, mental, or emotional limitation as a moral failing. We prop up a culture that centers the bodies of able-bodied, neurotypical people and defines all others by their distance from that “norm.”

When we refuse to accept our own limitations, we are propping up an ableist culture that demands that others refuse to accept their own limitations, that frames limitations as laziness– as moral failure.

When we pretend that “anyone” can be wealthy, thin, or healthy with “hard work,” and that any lapse in relentless work is the “reason” we aren’t wealthy, thin, or healthy, we prop up an ableist, classist culture that serves only the wealthy and powerful. And while there are some wealthy people who “worked hard” to “get there,” they did not work HARDER than poor or middle class people. If hard work = wealth, every nurse and teacher would be wealthy. Most wealthy people inherited their wealth anyway.

Our culture supports the lie that anyone can be wealthy, successful, thin, and healthy through “hard work” because it benefits the privileged when those of us who are not privileged are fooled into believing financial privilege, thin privilege, and healthy privilege are merit-based. We are complicit in this lie when we refuse to challenge the idea that constant, unrelenting labor that ignores physical, emotional, and psychological limits is the highest good, and anything less is a moral failing.

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(Picture shows fluffy pink clouds and the words, “It’s OK not to be OK.”)

 

We are in the middle of a global pandemic worse than any we have seen in over a hundred years, and I say this as someone who had H1N1. I’m not going to list the many reasons people who live in a nation ruled by an incompetent, vindictive, childish narcissist have to be anxious. Suffice it to say: We are anxious. We are not OK.

Ableism demands that we never allow ourselves to be seen as “not OK”– not fully able. Because being dis/abled is a moral failing.

You don’t need to have a blue placard or a medical diagnosis to be dis/abled. You may not be a person with a disability, but the extreme emotional and psychological demands of this crisis– or of life in general– can leave you dis/abled. Unable to continue at the pace at which you’re continuing.

Those of us who identify as people with disabilities are right there with you. We understand. And we all need to agree together that it is OK to be disabled or dis/abled. It is OK not to be OK. Because the alternative– limitations = failure– is at the core of the ableist culture that oppresses us. We need YOU to be OK with not being OK to help us shift the culture toward greater inclusion of people with disabilities.

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Stella Young, 1982-2014. Photo credit: crippledscholar.com (Picture shows Stella Young, a woman looking cute as hell in a long-sleeved red shirt, red lipstick, and a light brown bob haircut, sitting in her wheelchair and looking into the camera with a slight smile and her eyebrows raised. The quote appears in red on a yellow background: “That quote, ‘the only disability in life is a bad attitude,’ the reason that’s bullshit is . . . No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille.”)

People with disabilities aren’t inspired by posters of athletes with disabilities emblazoned with “What’s YOUR excuse?” or the label “handi-capable.” We don’t need “encouragement,” or a lecture about “You’re only disabled if you allow yourself to be” or “Don’t let your disability stop you from reaching THE STARS.”

What we need is cultural acceptance of limitations. And whether those limitations are physical and permanent like mine, or temporary and emotional like ::gestures broadly at the quarantined world::, the cultural function is the same. It’s OK not to be OK. It’s OK to need help, whether that’s an elevator or a day off.

Every time you publicly chastise yourself for skipping a workout, taking a day off, getting takeout instead of cooking, allowing the kids to watch TV so you can have a break, or otherwise acknowledging your limitations, you are building cultural support structure around ableism. You are supporting a world that sees limitations as failure rather than as a fact of human existence.

Take that break. Take all the breaks. And refuse to apologize for it.

You’re not OK? Glad to hear it, because it means you are creating cultural space for people with disabilities by using your able-bodied cultural privilege to claim space for limitations, to show that we all still have value– and can still achieve plenty– within our limitations.

It’s important to fight for the idea that limitations and accommodations are not admissions of weakness. PwDs are not “weak” or “lazy” if we don’t do wheelchair basketball or if we need to work from home. You are not “weak” or “lazy” if you need a day off or if you don’t learn quantum mechanics during shelter-in-place.

Accommodations are not burdensome. I cannot “work hard” or “positive attitude” my way out of my physical limitations. Accommodations level the playing field so that we can achieve as much as able-bodied people. The accommodations able-bodied need for their limitations are similarly not burdensome. The more space we create in our culture for acceptance of limitations and the natural and obvious need for accommodations– the natural and obvious need to allocate resources for accommodations– the more inclusive our culture will be.

“What’s your excuse?” I don’t NEED an excuse to have human limitations. And neither do you.

 

 

 

 

 

 

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Representation Matters: People with Disabilities Are Done Being Your Inspiration

 

 

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Photo of a version of the American flag with the stars configured to look like the symbol for disability. (Photo credit: money.cnn.com)

We need a long, hard examination of the way we’re representing people with disabilities on our stages and screens. We talk a lot about equity and inclusion, but almost always ignore people with disabilities in those discussions, leaving our industries far behind where they should be on this issue.

We’re still so far behind that casting PwDs as PwDs is controversial. Able-bodied people fight hard for their “right” to cast able-bodied actors to play us, then shut us out of every aspect of the process. Able-bodied people insist they’re doing “extensive research,” yet portrayals of PwDs are more often than not astoundingly inaccurate, more about how you see us than how we really are.

We’re still so far behind that casting PwDs has been called “exploitative,” as if our physical presence must always be measured by the gaze of able-bodied people. It reminds me of the way sexist writers claim women are “flaunting” their bodies by simply appearing in public. Our physical presence in the world as PwDs (or women, for that matter) is not about you. Our physical presence as PwDs is so deeply othered that any public performance is automatically suspect– it must mean something. Add to that the relentless infantilization of PwDs by able-bodied people, and our every appearance as actors results in a flurry of pearl-clutching about how we’re being “displayed,” “used,” or “exploited,” as if PwDs are children who need protecting instead of actors who need jobs.

It’s “exploitative” when we play ourselves, but ennobling when you play us.

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During preproduction for the film The Upside, released in January 2019, producers refused to consider actors with disabilities for the role of Dell Scott, a quadriplegic character, instead first casting able-bodied actor Colin Firth, and then replacing him with Bryan Cranston, drawing criticism from disability rights activists. (Photo by David Lee/The Weinstein Company depicts Cranston seated in a wheelchair on a busy city street, laughing as actor Kevin Hart stands on the wheelchair behind Cranston, leaning down and laughing.)

We’re still so far behind it’s considered a special kind of acting triumph when an able-bodied actor plays us because, like actors who gain weight or allow themselves to be made “ugly” for a role, they’re working hard at lowering themselves, appearing less glamorous, less desirable, less perfect. The actor is ennobled by their humility, by the sacrifice it took to present themselves pretending to be what we are every day of our lives. 

We’re still so far behind that the types of stories we tell about PwDs all center around our difference: inspiration porn, tragedies, the Manic Pixie Sick Girl (and as she’s lowered into her grave, he realizes he has finally learned how to live), and the DEI Sidekick (Hi. I’m here to make the producers look inclusive and the protagonist look sympathetic oops time to die to provide motivation for the protagonist). There are more (so many more) but you get the idea.

Please note that all of these are almost always played by conventionally beautiful, thin, able-bodied white people, and that these issues are intersectional. While this piece focuses on PwDs, bear in mind that people of color with disabilities are facing two major hurdles; female-identified and genderqueer people of color with disabilities are facing three, etc. Women of color are in fact the vanguard of disability rights activism.

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Writer and activist Imani Barbarin, who runs the blog Crutches and Spice, is the force behind #DisTheOscars, an advocacy campaign around disability representation in the media. (Photo by Madasyn Andrews depicts Barbarin, a Black woman with long, thin dreads, smiling in a garden setting, wearing a blue flowered dress and a black jacket, with one of her crutches visible on her arm.)

In the United States, between 13 and 19% of the population are PwDs. That’s a sizable population, yet we are aggressively shut out of every aspect of visual narrative, our stories stolen from us and told by able-bodied people, for able-bodied people.

This begs the question, “What are our stories?” It’s an important question, because the answer is: ALL OF THEM, KATIE. We’re a massively diverse population occupying every race, gender, sexuality, age, belief, and socioeconomic status. The vast majority of our stories are not “disability stories.” We are people with disabilities– people first– and the majority of our lives are spent wrapped up in the same issues everyone else has. Yet nearly every film, play, or show that hires an actor with a disability is doing so specifically to tell a “disability story”; when that narrative is over, the actor is released. We’re rarely allowed to tell any other kinds of stories. Disability is only represented when the story is about disability in some way.

Because we are hired far less frequently than able-bodied people, even with similar training and experience, we’re seldom in the room when these stories are developed, and if we are in the room, we’re one voice– often brought in late in the process as a low-ranking temporary hire (“disability consultant”). It’s no wonder that stories about PwDs are so often about the impact the PwD has on an able-bodied person.

Lack of representation is a vicious circle. Because we are so seldom represented as anything but life support for able-bodied inspiration, PwDs are almost never considered for “straight” roles. It never occurs to producers and directors to cast an actor with a disability in a story not specifically about disability, because they, like the rest of us, live in a world where PwDs are dramatically under-represented throughout all of our media and have come to see that under-representation as “normal.”

Our industries create fantastic, imaginary worlds, but we can’t imagine a Juliet with a mobility device? Our imaginations can comprehend time travel, dragons, talking animals, alien cultures, telekinesis, and 500 different kinds of afterlife, but a disabled Hedda Gabler is incomprehensible? You think that if you cast a PwD, the narrative becomes about the disability because those are the only stories we allow PwDs to tell. 

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Marilee Talkington, a brilliantly talented actor, has a long career of playing both blind and sighted characters. Talkington has played blind characters on several TV shows recently, drawing praise from the National Federation of the Blind and their #letusplayus campaign. (Photo by Cheshire Isaacs depicts Talkington from the shoulders up: a white woman with curly red hair, blue eyes, and coral lipstick, wearing a wine-colored sleeveless top.)

Allow people with disabilities to tell all kinds of stories, including our own. The right to portray someone different than you is not the exclusive province of the able-bodied. Able-bodied people defend their right to play us with “It’s called ‘acting'” without ever once considering that we can do it too.

Hire people with disabilities at every level, from conceptualization to casting to audience management, not just in temporary positions meant to shield you from controversy. When you talk about “inclusion,” remember: we’re here, and we are not going away.

 

 

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The “Outrage Machine” and Calls for “Calm”

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Connie Lim (aka MILCK) photographed by Rachael Lee Stroud.  Source: milckmusic.com

A few days ago, I read an excellent article in Very Smart Brothas by editor-in-chief Damon Young entitled “Polite White People Are Useless.” Being a polite white person myself, my first reaction at seeing the title was that slight rise of defensiveness in the pit of my stomach– you know what I’m talking about, white people. That feeling of “BUT BUT BUT.” “But I don’t do this” “But I don’t mean it like that” “But I’m not racist” “But #notallwhitepeople” The feeling that immediately informs me: HERE LIES YOUR COMPLICITY IN WHITE SUPREMACY. Pursue this. Sit in your discomfort. Listen and learn.

Sometimes that feeling means it’s something I’m doing myself. Sometimes it means it’s something I’m letting pass unchallenged. So I used my discomfort as intuition and clicked on the article. In the article, Damon Young defines “polite white people” as “white people who call for decorum instead of disruption when attempting to battle and defeat bias and hate.” I let that slide at least half the time I see it on social media. “It’s just Facebook” is something I personally disagree with vehemently. Ideas put into the world do not wait for a particular venue to have their impact. Yet here I was, using “it’s just Facebook” as an excuse to avoid uncomfortable conversations. Ugh. Here lies your complicity in white supremacy.

While I was processing this, I encountered the inevitable calls for “calm” and calls against “constant outrage” in my various feeds, all from cishet white people with Christian heritage. I began to think deeply about this in the context of the VSB article. What do these people actually mean when they ask us to tone down the “outrage machine” or when they tell us an issue is “just a distraction?”

What are these issues about which we should be “calm”?

We’re battling literal Nazis. (“But they’re such a small group.”)

The Department of Homeland Security released a report in 2009 demonstrating that white supremacists were infiltrating law enforcement as a deliberate strategy and nothing was done about it due to conservative backlash. (“That doesn’t sound right.”)

And now several metropolitan police forces are quietly dismissing hundreds of thousands of cases (900,000 in New York alone), and paying out millions in settlement dollars due to police officers planting evidence (repeatedly in Baltimore) and arresting innocent people of color to meet quotas (“But they were caught, so, good, right?”)

The Trump Administration attempts to block police reform and coddles white supremacists. (“You can’t fight every little thing.”)

One of the worst natural disasters of our lifetimes has devastated Texas, causing an urgent humanitarian crisis. Thirty-one people have died and tens of thousands have lost everything and are living in packed shelters, yet now is the time Evangelical Christians (who make up a full quarter of our nation’s population) saw fit to release a document condemning all LGBTQ people and all Christians who support the human rights of LGBTQ people. By current estimates, there are about a million LGBTQ Texans, and LGBTQ people of color make up 55% of that. (“Evangelicals always hate LGBTQ people, so what does it matter?”)

I am barely scratching the surface.

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On July 19, these young women participated in Jolt’s “Quinceañera at the Capitol,” a protest against Texas’ anti-immigration bill SB4 that celebrated Latinx culture while protesting racism. Jolt is a Latinx-run nonprofit focusing on issues of importance to the Latinx community in Texas. More at jolttx.org. Photo: @blurandgrain on Instagram

 

Calls for “calm” and posts denouncing the “outrage machine” are difficult to hear when it’s your family on the line. White Christians overwhelmingly voted for a man who ran on hate and support him as he governs from a place of hate. Hate of journalists; hate of women; hate of Mexicans; hate of Black people; hate of the disabled; hate of Muslims. He has a long history of racism and of courting white supremacists. While bigotry and racism are not new in this nation by a long shot, what we are seeing is a cultural moment where it’s become fashionable among a certain group of people to express these views openly. Now racism is an open badge of honor for some, a winking disingenuous pretense for even more. From the right it’s “I’m not racist; I just think the Confederate flag and Confederate statues are our heritage”; from the left it’s “Identity politics are holding us back; economic justice will solve racism, so we don’t need to work on it directly unless it’s obvious racism. And of course by that I mean racism that is obvious to me as a white man.”

This upswing in white willingness to be either openly and actively racist or to cast an abdication of responsibility for white supremacy as a greater good has already resulted in violence. Violent racists are emboldened by everything from outright encouragement to a lack of resistance. This new willingness to either openly express active bigotry or support it winkingly while pretending to oppose it extends to sexism, antisemitism, Islamophobia, ableism, transphobia, homophobia– everything people mean when they decry “identity politics.”

Demonstrators protesting the shooting death of Alton Sterling gather near the headquarters of the police department in Baton Rouge, Louisiana

Pennsylvania nurse Ieshia Evans embodies grace and power as she faces riot police in Baton Rouge at a July 2016 protest against the police murder of Alton Sterling. Photo: REUTERS/Jonathan Bachman

With all that in mind, what does it mean when people with privilege call for “calm” or an end to “constant outrage”? What does it mean when people with privilege scold others for responding to “distractions”— a label used almost exclusively for issues of concern to marginalized populations? What does it mean when people with privilege tell others to stop reacting to bigotry? Specifically what are they asking for?

What could they be asking for but silence? Less vocal insistence that the human rights of targeted populations be achieved and protected? A respite from open resistance?

When you ask targeted populations “aren’t you tired of the constant outrage?” it’s like asking someone getting beaten in an alley if they’re tired of getting hit. OF COURSE we’re tired of constant outrage. But what choice do we have? And if you have the cultural privilege that gives you a choice, it means something specific when you choose “stop reacting to distractions” or “I’m sick of the outrage machine.”

Decrying “distractions” and “the outrage machine” is just another aspect of privilege fragility. “I cannot take the discomfort that comes with your struggle for human rights, and I want to be the gatekeeper who decides what’s important enough to fight and what we should let pass.” When people with privilege set themselves up as the gatekeepers who decide what merits outrage and what does not, we are actively preserving that privilege. Gatekeeping is a major function of cultural privilege.

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Image by Cheshire Isaacs created from the iconic Getty photo of Reno, CA resident Peter Cvjetanovic, among others, at the white supremacist march in Charlottesville, VA in August. For more, see cheshiredave.com

Now more than ever we need to take breaks for self-care during the chaotic Trumpian news cycle. We each cannot personally react to every new horror that occurs, especially as tribalism has replaced patriotism, frustratingly making the usual tactic of raising awareness through education far less effective. On the right, tribalism takes the form of continuing to support a president who defends people marching under Nazi, KKK, and white supremacist banners as “very fine people” who just happened to show up to a march advertised with images of Confederate flags, Nazi eagles, and the names of several of the nation’s most prominent white supremacists. On the left, it takes the form of supporting people who claim that “identity politics” are destroying us, as if issues of concern to the liberal base– women and people of color– are a detour from “real” issues (i.e., the issues important to white men). This constant barrage of nonsense is exhausting. But taking a break for your own self-care is a world apart from telling others they should shut up (“stop reacting to distractions”; “stop feeding the outrage machine”).

When someone is reacting to bigotry, especially if it’s bigotry you do not personally experience, especially if that reaction makes you uncomfortable, stop and listen. Think: why is this important to this person? What experiences have they had to make this issue crucial to them? What do they need to see from me as a person with privilege? Is my voice even needed in this discussion?

Nothing positive is contributed to the discussion– or to the world–by calling for “calm” in the face of bigotry, by scoffing at the “outrage machine” when people speak out against hate, by calling bigotry “a distraction,” or by denouncing “identity politics” when people are fighting for their basic human rights. I’ve been in conversations where people have been called out for this and responded so beautifully it moved me to tears. And I’ve been in conversations where the exact opposite happened.

Discomfort sucks. Believe me, I know. But the discomfort that comes from confronting your own privilege and your complicity in systems of oppression is nothing compared to experiencing that oppression. Most of us have an intersectional identity that encompasses some of both, so let’s use that to draw on when we see others speaking out about issues important to them rather than tell them their issues are “a distraction” or “just part of the outrage machine.”

 

 

 

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The “Playwright’s Intent” and the Dangers of the “Purist”

It’s always exasperating to see people scolding directors for “desecrating” a canonical play or a canonical playwright’s “intent” because they cast actors of color, cast a disabled actor, or removed something racist (or sexist, antisemitic, ableist, etc) from the work. It’s exasperating because it’s the smallest and least artistically viable point of view to have about modern stagings of canonical work.*
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Our “canon” has deliberately shut out women and people of color for a great many generations. Until fairly recently in western history, it was very difficult for women and people of color to become playwrights (lack of access to education being a significant bar), and for those who were playwrights, it was very difficult to get produced outside of certain theatres. Even if produced, the work of women and people of color was rarely considered “important” or “universal” enough to be included in the kinds of awards, articles, books, and university courses that created what we consider to be the “canon.” Plays that were considered “universal” reflected specifically white and male points of view; plays that differed from that were considered specific to a cultural subgroup rather than “universal” in the vast majority of cases. Even today, most works in a traditional survey course are written by white men while “Black theatre” is its own category, often represented by a single play. In my undergrad education, that play was the short piece “Dutchman” by Amiri Baraka– we didn’t even read a full-length play. “Asian Theatre,” “Chicano Theatre,” and “Feminist Theatre” are still often brief mentions as classes move directly to more important, “mainstream” writers such as Sam Shepard and David Mamet, with Caryl Churchill the lone female voice in an otherwise very male reading list.

Scholars and theatremakers have begun the process of interrogating the formation of the canon, as well as reframing the works we consider “canonical” within their specific sociohistorical context rather than continuing to pretend these works are “universal.” This is vital work.

You only get answers to the questions you ask. Scholars and theatremakers are asking new questions about “canonical” works and the formation of the “canon.”

When we stage canonical work, we have two choices. The first is what is mistakenly referred to as the “purist” approach. This approach holds that works should be preserved untouched, performed precisely as they were first performed. There’s some educational value in performing work in historically accurate ways– at least as far as we can reconstruct that level of accuracy. Those who advocate for this approach believe they are defending the “playwright’s intent,” which means they somehow believe that their interpretation of the “playwright’s intent” is the only accurate one. These people are, in my experience, overwhelmingly white and male, and, as such, have been taught from birth that their experience of the world is universal, and their interpretation of the world and its processes and symbols is “correct,” so it’s not entirely surprising that they believe they are the only ones who understand the “playwright’s intent” and can therefore separate what is a reasonable interpretation of a work from page to stage from what is a “desecration.”

There are many problems with the purist approach. First of all, no one knows the playwright’s intent if the playwright, as is the case with most canonical plays, is dead. Even if the playwright wrote a 47-paragraph screed entitled “Here Is My Intent: Waver Not Lest Ye Be Tormented By My Restless Spirit,” no one knows what the playwright’s intent would be if he had knowledge of the cultural changes that occurred after he died. The audience for whom he wrote the play– the culture that understood the references, the jokes, the unspoken inferences; the culture that understood the underlying messages and themes; the culture to whom the playwright wished to speak– is gone, and modern audiences will interpret the play according to their own cultural context. Slang terms change meaning in months; using a 400-year old punchline that uses a slang term 90% of the audience has never heard seems closer to vandalizing the playwright’s intent than preserving it. Would Tennessee Williams or William Shakespeare, masters of dialogue, insist that a line using a racial slur now considered horrific still works the way he intended? Still builds the character the way he intended? It seems dubious at best, yet this is the purist’s logic. The playwright’s intent on the day the play was written, the logic goes, could not ever possibly change.

It’s important to continue to study these works unchanged. We must not forget or attempt to rehabilitate our past. But to claim that lines written decades or even centuries in the past can still work the way the playwright originally intended is absurd.

We have begun to understand that the “canon” and its almost exclusively white male point of view is not “universal,” but is a depiction of the cultural dominance of a certain type of person and a certain way of thought. We have begun to re-evaluate those works and the “canon” as a whole as part of a larger historical narrative. This is why it is of great artistic interest to stage “canonical” work in conversation with the current cultural context.

When staging, for example, The Glass Menagerie in 2017, one must consider the current moment, the current audience. We can choose to present the work precisely as it was presented in 1944 as a way to experience a bygone era, or we can present the work in conversation with its canonical status, in conversation with our own time, in conversation with the distance between its era and our own, in conversation with the distance between the playwright’s intent and the impossibility of achieving that intent with a modern audience, simply due to the fact that too much time has passed for the original symbols, context, and themes to work the same way they once did.

What does The Glass Menagerie— or any canonical work– mean to an audience in 2017? What can it mean? What secrets can be unlocked in the work by allowing it to be interpreted and viewed from diverse perspectives? What can we learn about the work? About the canon? About the writer? About ourselves?

The meaning of any piece of art is not static. Whether the piece of art is a sculpture created in 423 BCE or a play written yesterday, the meaning of any piece of art is created in the mind of the person beholding it in the moment of beholding. The meaning of each piece changes with each viewing, just as the meaning of what we say is created in large part by the person to whom we’re saying it, which is why we can say “Meet me by the thing where we went that time” to your best friend but need to say “Meet me at the statue across from the red building on the 800 block of Dunstan” to an acquaintance. To insist that there is one “correct” meaning– always as determined by a white male– is to deny the entire purpose and function of art. You cannot create a “purist” interpretation without the play’s original audience in attendance. The closest you can come is a historical staging a modern audience views as if through a window, wondering how historical audiences might have reacted, or marveling at the words and situations historical audiences found shocking– or did not. How many audiences in 2017 understand Taming of the Shrew as a parodic response to the popularity of shrew-taming pieces? Shakespeare’s audience is gone and the cultural moment to which he was responding is gone, so the possibility of a “purist” staging is also gone.

This is 2017. Our audiences live in 2017. It’s insulting to them to present a play written generations in the past as if nothing about our culture has changed since then, as if a work of genius gave up every secret it had to give with the original staging, as if art has nothing whatsoever to do with the audience viewing it. 

We know better. Art lives in our hearts and minds, whether those hearts and minds are white and male or not.

*Of course I am only referring to interpretations that have received permission from the writer or estate, or stagings of work in the public domain. This is not– at all– an argument in favor of running roughshod over someone else’s IP.
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