Monthly Archives: July 2020

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.

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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.

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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.

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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.

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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.

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My Patreon is Launching!

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Pictured: A 1948 ad for the Hillman Husky, which says, “New Double Duty Hillman at a low price.”

Hello, Bitter Gertrude readers!

I’m launching my Patreon! My goal is to be able to devote more time to bringing you Bitter Gertrude’s cultural & political analysis with a focus on equity (and back-sass). For that, I need your help!

I have six different levels of patronage, all of which come with access to the Bitter Gertrude Book Club, a bimonthly post that contains reading recommendations related to Bitter Gertrude posts, current events, and writers to keep your eye on. At $20 and above, you also get access to “Words Words Words,” a monthly tip sheet about language & social justice, etymology, writing mechanics, and other aspects of word nerdery.

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ANNOUNCE IT TO THE WORLD      (Pictured: Medieval marginalia depicting a naked trumpeter holding one trumpet to his mouth and another to his butt. Medieval marginalia is full of butt-trumpeters.)

Whether you are able to join or not, please know that I value your support over the past seven (!) years, and my regular Bitter Gertrude content will always be free to access.

My next post comes out in a few days! It’s Disability Awareness Month, and I’ll be writing about allyship all month.

Thank you again for reading Bitter Gertrude! You mean the world to me.

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