Category Archives: Disability Pride

Do you live in a bubble? Yeah, me too!

You’ve probably seen some version of the NPR bubble quiz.  It was published in March, 2016, but has been making the rounds on Facebook again.

It’s prefaced like this:

There exists a new upper class that’s completely disconnected from the average white American and American culture at large, argues Charles Murray, a libertarian political scientist and author.

Of course, if it’s based on Charles Murray’s work, it gets an automatic 5-star bullshit rating, but I took it for fun, and learned that I’m pretty bubblified:  my father was a lawyer; I’ve never owned a pickup truck; and I can’t identify military insignia.  I’m saved from total hermetically sealed oblivion by the fact that I have had friends who are evangelical Christians, have purchased Avon products,* and am pretty sure Tim would have gone fishing in the past five years if it weren’t so inaccessible.

Why is it, though, that we only think of educated middle-class liberals as living in a bubble?  And those in Murray’s white suburban Christian bubble as defining “American culture”?

Want to see if you are part of “American culture” as millions of people outside the exurbs of the south and midwest experience it?  Take the official ThoughtSnax Bubble Quiz!


Do you have any close friends or family members who rely on a wheelchair to get around (full time; not just at the airport)?**

Have you ever been unable to shop, dine out, or patronize an entertainment venue because of architectural barriers?

Have you ever been unable to enjoy a movie, play, concert, or sporting event because of communications barriers?

Do you consider people with significant disabilities who do ordinary things like work, shop, or dine out with friends to be “inspirational”?

Do you regularly interact professionally with professionals of other races or national origins?

Do you have any friends who are gay or lesbian?  Trans?  That you know of?

Do you know what “trans” means?

Have you ever been mis-gendered or dead-named?  Do you know what this means?

Have you ever read a book, article, or poem by any of the following?

  • Ta-Nehisi Coates
  • Dan Savage
  • Laura Hershey
  • Viet Thanh Nguyen
  • Stephen Kuusisto
  • N.K. Jemisin
  • Junot Diaz
  • Marjane Satrapi
  • Philip Pullman
  • Jhumpa Lahiri

Have you or anyone close to you ever feared for their life, health, or safety at the hands of the police?

Have you or anyone close to you ever feared for their life, health, or safety if pending Republican “health” “care” legislation were to pass?

Do you know any Jews?

Do you know any Jews as personal friends, not just colleagues or professionals?

Do you know who any of these people are?

  • Fred Korematsu
  • Maysoon Zayid
  • Stella Young
  • Audre Lorde
  • Justin Dart
  • Sarah McBride
  • Bill Lann Lee
  • I. King Jordan
  • Bree Newsome

Have you ever had anyone attempt to proselytize you or convert you to their religion?

Do you have an education that you’re proud of?

Have you ever experienced discrimination on the basis of your race, sexual orientation, gender/identity/expression, disability, or national origin?

Has anyone ever assumed you were:

  • the nanny?
  • the help?
  • the aide?
  • unable to speak for yourself?
  • not married to your actual spouse because you’re the same gender?
  • not married to your actual spouse because one of you has a disability?
  • a different religion, nationality, or gender because you don’t look like they assume people of your religion, nationality, or gender should look?

Have you ever been on the receiving end of a “bless your heart!”

Are you sick and tired of non-disabled, straight, cis, white, Christian conservatives acting all superior because you answered “yes” to many of these questions?

UPDATE (from my astute and perceptive sister-in-law, Terri Robertson):

Have you ever been subjected to harassment because of your gender?

Have you had your reproductive or sexual health choices questioned?

Do you dress based on fear?

Can you walk by yourself in a parking garage without fear? Can you walk anywhere by yourself without fear?

UPDATE II (from my astute and perceptive step-sister-in-law*** Annie McQuilken):

Have you ever had your parenting skills questioned in public because your kid didn’t look or behave “typically”?

******

*The quiz did not require me to have used these products.

**You knew that would be first, right?

*** My parents did not supply me with any sisters, but luckily we have an extensive blended family that provided a few.

Micro Aggressor Dramatic Overreaction Syndrome

Envard Munch’s “The Scream.” Description from the BBC: Beneath a boiling sky, aflame with yellow, orange and red, an androgynous figure stands upon a bridge. Wearing a sinuous blue coat, which appears to flow, surreally, into a torrent of aqua, indigo and ultramarine behind him, he holds up two elongated hands on either side of his hairless, skull-like head. His eyes wide with shock, he unleashes a bloodcurdling shriek. Despite distant vestiges of normality – two figures upon the bridge, a boat on the fjord – everything is suffused with a sense of primal, overwhelming horror.My first blog post* — presciently titled “In which I start my new blog by offending everyone” — discussed the fact that ostensibly right-thinking people, who have banished from their vocabulary epithets based on race, gender/identity, religion, national origin, and sexual orientation are still more than willing to toss around epithets based on disability.  And when you call these paradigms of liberal open-mindedness on this insulting inconsistency, you get a very consistent reaction:  that’s just one too many interest group’s feelings to keep track of.

This is such a consistent reaction it needs a name:  Micro Aggressor Dramatic Overreaction Syndrome.

Yesterday, I had this email exchange with a well-respected older, white, male, lefty plaintiff’s lawyer — let’s call him “Joe” because, I promise you, that’s not his name — starting with a post to a listserv about what one person might have known about another:**

Joe (to listserv):  I know that love is blind, but I don’t think it’s blind, deaf and dumb.  (Apologies for use of non-PC references to visual, auditory and speech disabilities.)

Me (in a private email to Joe):  C’mon Joe: “ I know that love is blind, but I don’t think it’s blind, deaf and dumb.  (Apologies for use of non-PC references to visual, auditory and speech disabilities.)”   You know we love you, but that’s really not OK.  I always try to do the protected-class switcheroo:   would you have said something demeaning about a person of color, LGBTQI person, etc, and then excused it as “non-PC”?  Thanks.

This, of course, would have been a good time for Joe to say “oops, I fucked up” or “sorry, I didn’t think about it that way.”  Instead, he doubled down and displayed a classic case of Micro Aggressor Dramatic Overreaction Syndrome:

I was trying to inject a note of levity, although that note might have been flat.

Of course, I did not mean that love is literally blind.  Obviously, the term “blind” is a metaphor.  So is the word “blind” in the saying, “There are none so blind as those who will not see.”  That refers to people who will not see, in a volitional sense, not to those who cannot see, who have a severe vision disability.

My use of “deaf” and “dumb” was also metaphorical, although in this case it might have been volitional as well.  [Did the witness choose not to know?]**

Maybe I’ll just swear off metaphors.  They can be treacherous.

“Oh poor me!  Instead of thinking about people with disabilities as human beings instead of metaphors for failure, I’ll just swear off metaphors!”  Micro Aggressor Dramatic Overreaction Syndrome.  And of course, it’s the metaphoricalness (metaphorocity?) that’s the problem:  he invokes disability as a negative quality of someone who apparently refuses to recognize a bad fact about someone else.

I responded:

You don’t have to swear off metaphors; only those based on negative associations with protected classes.  I’m guessing you wouldn’t metaphorically call someone an “Indian giver,” or use the term “Jew him down,” or “n****r in the woodpile.”  All of these are metaphors that we have long ago left behind – with good reason.  Disability metaphors are some of the last to go, but I think it’s time to leave them behind too.

Thanks for thinking this through.

No response, which I suppose is as it should be:  we’d each said our piece.  I said this two years ago and I’ll say it again:

I’m done. I’m done being polite.***  I’m done shutting up about good liberals who seem to get every sort of civil rights and civil liberties except the equality of rights, respect, and dignity of our brothers and sisters with disabilities.  I’m done with disability rights as a “when we get around to it” right.  I’m done with people who are willing to use respectful terminology except — *big sigh* — avoiding using the word “retard” is just one step too far toward thought control.  And I’m done with “civil rights” law firms in inaccessible offices and “civil rights” lawyers who don’t hire interpreters.  I’m done.

Still done.  Even more done.

***************

*Not actually THE first blog post — which was, of course, “Hello, World!” — but next after that one.

**Eliding any information that might actually relate to the case in question.

***Yes, I know, there is clear and convincing evidence that I was done with politeness, as a general matter, a long time ago.

You’ll Never Be as Radical as This 18th-Century Quaker Dwarf – NYTimes.com

Slowly, over a quarter-century, his relentless agitation changed hearts and minds. … He died a year later, an outsider to the Quaker community he loved, but a moral giant of a man.

Source: You’ll Never Be as Radical as This 18th-Century Quaker Dwarf – NYTimes.com

Seriously? Seriously??? You write about a radical Little Person who presciently opposed slavery, point out that part of why history has ignored him is his disability, and conclude with words equating moral superiority with physical size or typicality.

And we wonder why no one ever gets disability rights.

Prejudice leaks

I wonder about the term “micro-aggressions,” because they’re neither.  They seem to me to be prejudice leaks, neither aggressive nor — because they reveal an entire worldview — micro.*

We all have internal worldviews that are full of prejudices and assumptions.  Some true, some false; some examined, some unexamined; some praiseworthy, some benign, some offensive.  Then we encase the whole mess in the persona we are presenting to the world.  A thick exoskeleton of personality that is all most people ever see.

Image: Michelin Tire logo - human figure made of tires, with the effect of a puffy, tire-encased human.

Many people choose to encase themselves in an open-minded persona.  Maybe it helps them fit in to a liberal social circle or workplace.  Or maybe they genuinely believe they are open-minded.  It’s important to their self-image.  Or maybe it’s important to you to believe they’re open-minded.  They’re your friend, teacher, colleague, doctor, pastor.  You want to believe they see you as you are.

Then they say:

I’m so sorry your husband uses a wheelchair” ::furrowed eyebrows concerned face::  or

“are you the nanny?”  or

“where are you really from?” or

“you must be the first person in your family to go to college.”  or

“you’re so articulate!” or

is the father still in the picture?” or

“I know your kid has two moms, but who’s the real father?”

and a little fissure forms in the exoskeleton and the prejudice leaks out.**

Image: Michelin Tire logo - human figure made of tires -- with a small hole in his head and lines indicating a leak.

Suddenly you can see, in that small leak, the entire worldview that sits inside the protective exoskeleton.  That they view disability through a lens of pity.  That they have seen your skin color or facial features and constructed an entire narrative that has nothing to do with you.  That their views of LGBTQ families are stuck somewhere around 1950.

In many cases, it’s not aggressive,*** but it’s not micro.  It’s an inadvertent glimpse of an entire worldview you didn’t know existed, or didn’t want to know existed, or hoped against hope and experience did not exist, or perhaps they didn’t know existed or had been suppressing or had never stopped to think about or didn’t even have the framework to understand.

Prejudice leaks.

It doesn’t sound as cool as micro-aggression.  It sounds like something that requires padded undergarments.  But I honestly think it’s a more accurate description.

******************

*I realize I’m wading into an arena that has been the subject of a good deal of academic thought, research, and writing, and that I have 0.00 qualifications to take on that analysis.  This is a strictly non-academic view, from someone who has witnessed many real-life prejudice leaks that seemed neither micro nor aggressive.

**Not bad for someone who can’t draw, eh?

***There are plenty of cases where comments like these are aggressive, but in that case I wouldn’t call them “micro-aggressions,” I’d call them “prejudice” and perhaps also “being an asshole.”

Nevertheless she persisted, disability rights division (a start) (updated)

As most of the world knows by now, the white Republican men of the Senate voted to silence Sen. Elizabeth Warren when she attempted to read a letter from Coretta Scott King.  Majority Leader Mitch McConnell stated, “She was warned. She was given an explanation. Nevertheless, she persisted.”

Nevertheless, she persisted.

It’s now a badge of honor, not to mention accurate description of the persistence of the women who have broken barriers in a wide variety of fields.  Herewith, my small contribution:   Nevertheless, she persisted, disability rights division, with an emphasis on ass-kicking disability rights sheroes I know and love, and a few I love but don’t know, but wish I did.

Update: more #persistent women added below; will try to keep adding, but there are so many of you!!!

Carrie Ann Lucas.  [Image:  Carrie, a large white appearing woman in a colorful dress, in a power wheelchair using a vent; her daughter Heather, a smaller white appearing woman in a plaid shirt and jeans, in a wheelchair; behind Heather, Carrie’s daughter Aszia, a tall dark skinned woman in a t-shirt and jeans; Carrie’s son Antonio, a white appearing teenage boy in a brown shirt; Carrie’s daughter Cinthia, a light skinned teenage girl in a pink tank top in wheelchair; and Carrie’s daughter Adrie, a dark skinned teenage girl with a blue shirt and blue hair tie, in a power wheelchair.]

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Robin Stephens and Laura Hershey.  [Image: two light skinned women who use wheelchairs.  Robin in a flowered jacket and black shirt with short salt & pepper hair; Laura in a maroon jacket with brown hair using a vent.  With them, is a light skinned woman in a blue shirt.]

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Julie Reiskin.  [Image: light skinned woman with glasses perched on top of her head, in wheelchair, hugging a golden retriever dog.]  I suppose I should have chosen a more professional photo of Julie, but Julie and Chinook were besties.

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Haben Girma.  [Image:  dark-skinned woman with long hair, holding a keyboard and reaching out to a German Shepherd dog with a harness.]

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Corbett O’Toole.  [Image:  light skinned woman with salt & pepper hair, in wheelchair, speaking into a microphone.]

corbett-speech

Harriet McBryde Johnson.  [Image:  light skinned woman with two long dark braids, leaning forward in her wheelchair over a desk crowded with papers and books.]

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Marilyn Golden.  [Image:  light skinned woman with curly brown hair and glasses.]

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Stella Young.  [Image: small red-haired woman with a black dress and red polka-dot shoes, sits sideways in her wheelchair to smile a the camera.]

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Tatyana McFadden.  [Image:  light skinned woman in striped tank top, sits in manual wheelchair in front of a set of steps that are painted with her image and the quote, “Anything that a person with disabilities wants to do, they have the right to do, and that can change the world.”]

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Ingrid Tischer and Alice Wong.  [Image: Asian woman with glasses wearing a red shirt with white appearing woman with brown hair in blue flowered shirt.]

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Vilissa Thompson.  [Image: dark skinned woman wearing black shirt in a wheelchair next to President Obama.]

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Lydia X. Y. Brown.  [Image: Asian person in checked shirt with short black hair and glasses speaking into a microphone.]

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Stephanie Thomas.  [Image: close head shot of dark skinned woman with braids.]

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Becky Ogle.  [Image:  white appearing woman with short light hair, in a wheelchair, carrying what appears to be Justin Dart’s hat, surrounded by other people standing and using wheelchairs, and on the right, a uniformed officer speaking into a megaphone.]

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With deepest appreciation for these and many other #persistent women with disabilities.

 

This cute puppy has a deadly secret!

He stands for dehumanization and potentially fatal disrespect for the lives of people with disabilities.  Resist the Cute Puppy of Death — vote No on Proposition 106!

{Image: brown-haired light-skinned woman holding adorable gray puppy, both in lawn chair.}

Who doesn’t love a puppy?  Because of this, puppies advertise everything from toilet paper*, to beer**,  to the Americans with Disabilities Act***.   And likely for this same reason, Official Cute White Woman Brittany Maynard holding the Official Cute Puppy of Death has become the primary image associated with efforts to legalize physician assisted suicide, most recently Colorado’s Proposition 106, cleverly named “End of Life Options,” while offering only one new option:  death.****

The concept of Ultimate Autonomy is compelling, but both Prop 106 itself and the way it’s promoted are deeply dangerous for people with disabilities.  In my view, these are the features that are fatal to Prop 106*****:

  • “Terminal illness with a prognosis of six months or less to live” is a very broad definition, sweeping in many people who would be dead far sooner if not for the life-sustaining drugs and technologies on which they rely, yet there is no provision in Prop 106 for ensuring a candidate for physician assisted death has been offered or even counseled on these drugs or technologies.  Again: one option — death.
  • Two physicians and, in some cases, a psychologist, must verify that the person is “mentally competent,” a term that assesses their rationality but not other psychological conditions like depression or, um, suicidal ideation, conditions that would result in prompt referral for additional counseling in non “terminal” people.  In Amy Hasbrouck’s succinct cartoon:

Image: cartoon showing a person in a wheelchair looking at a building with stairs leading to door labeled "Suicide Prevention Program," and a ramp to a door labeled "Assisted Suicide."

  • Prop 106 sends the message that lives with disabilities that would be terminal without support are “undignified” and not worth living.  As the Denver Post reported:

In 2015, the top three concerns reported in [Oregon and Washington, where it’s already legal] were of the patient being less able to engage in activities that make life enjoyable, … steadily losing autonomy,… and losing dignity.

It’s not pain; it’s exclusion, control, and dignity.  Control is something we have more and more technology to address; exclusion and dignity go straight to the heart of a disabiliphobic society. Rather than hand out lethal doses, why not find ways to make “activities that make life enjoyable” more accessible to all?  And why have we defined “dignity” in a way that requires you to be buff, mobile, and continent?  I personally believe that dignity inheres in compassion, love, and a twisted sense of humor, none of which requires continence.

Carrie Ann Lucas summarized the problems in a January 2016 op-ed opposing assisted suicide bills pending in Colorado that were ultimately defeated.  Carrie explains that she would be eligible for death under the terms of the bill:

I am a person with multiple disabilities, including a progressive neuromuscular disease that has caused me to lose muscle function throughout my entire body. I have a gastrostomy tube, and I am dependent on a ventilator to breathe. Without my ventilator, I don’t have years to live. I don’t have six months, six weeks, or six days — I have hours. . . . I have a terminal condition — very much like ALS — and if assisted suicide were legal, I would qualify.

Though she qualifies for a lethal dose, Carrie is instead a leading disability rights lawyer and the sort of mom who makes sure her kids know how to cook and fish and protest social injustice. And!  Carrie has a puppy, too!  Her puppy is even cuter than The Cute Puppy of Death.  Her puppy is named Dart, after disability rights hero Justin Dart.

Support Dart, The Avenging Puppy of Disability Rights:  Vote No on 106!

Image: 9 week old black lab puppy laying on his human, sleeping with ears flopped out.

You can learn more at these sites:

******Footnotes********

*Linked image shows Labrador puppy on his back, covered with rose petals, advertising Cottonelle toilet paper.

** Linked image shows white guy in ball cap holding a Labrador puppy up to a fence, in which a bottle of Budweiser is perched; a horse looks at the beer bottle from the other side of the photo.

*** Linked image shows one slide from my attempt to explain Title III of the ADA using a photo of our 6-week-old golden retriever puppy with the words, “Title III of the ADA governs businesses like stores, restaurants, and theaters.”

**** As the inimitable Ingrid Tischer once said, how about if the options included adequate, accessible health care, attendant care, durable medical equipment and technology, and pain relief.   I’m pretty sure Ingrid said this, but I couldn’t find a link while I was drafting this, but also didn’t want to take credit for the thought when I’m pretty sure I read it on Tales From the Crip.

***** The official voter guide sets out the opposition thus:

1) Encouraging the use of lethal medication by terminally ill people may send the message that some lives are not worth living to their natural conclusion. People who are in the final stages of life are often in fear of the dying process. The availability of medical aid-in-dying may encourage people to make drastic decisions based on concerns about the potential loss of autonomy and dignity, not realizing that modern palliative and hospice care may effectively address these concerns. Services such as pain and symptom management, in-home services, and counseling can help individuals navigate the end of their lives while minimizing suffering. Promoting medical aid-in-dying may lead to a reduced emphasis on treatment and development of new options for end-of-life care.

2) Proposition 106 creates opportunities for abuse and fraud. The protections in the measure do not go far enough to shield vulnerable people from family members and others who may benefit from their premature death. Proposition 106 allows a family member or heir to be one of the witnesses to a request for the medication, potentially subjecting the individual to coercion. The measure does not require that a physician have any specific training in order to make an assessment of the individual or require independent verification that the medication was taken voluntarily or under medical supervision. Proposition 106 fails to ensure that the lethal medication will be stored in a safe location, potentially placing others at risk or leading to its misuse.

3) Proposition 106 may force physicians to choose between medical ethics and a request to die from a person for whom they feel compassion. The measure compromises a physician’s judgment by asking him or her to verify that an individual has a prognosis of six months or less to live, yet fails to recognize that diagnoses can be wrong and prognoses are estimates, not guarantees. The measure also requires that the physician or hospice director list the terminal illness or condition on the death certificate, which requires these professionals to misrepresent the cause of death.

‘Imbeciles’ and ‘Illiberal Reformers’ – An NYT Book Review Mini-Rant

‘Imbeciles’ and ‘Illiberal Reformers’ – The New York Times Book Review

Trigger warning:  The review contains a discussion of “eu”genics.  May lead to depression at the unlikely prospect that the American elite will ever be anything but entitled assholes.  May also cause excessive swearing and the urge to vomit.

The book under review examines the people and law behind the notorious Buck v. Bell decision, in which Justice Oliver Wendell Holmes, writing for an 8-1 majority, endorsed the practice of sterilizing people perceived to be of lower intelligence — called, in the law and in his decision, “imbeciles.”

The tone of this review is that not only is forced sterilization wrong but that it is somehow shocking to find support for it amongst the progressive elite of the turn of the 20th Century.

“Imbeciles” examines one of the darkest chapters of progressive reform, and “Illiberal Reformers” looks at the perils of intellectual arrogance in dealing with explosive social issues.

The review concludes in the future warning tense:

Buck v. Bell “has never been overturned.” In a world where the Human Genome Project is currently mapping heredity at breakneck speed, that fact alone should send shivers down the spine.

No, dear readers, the intellectual arrogance that puts people’s life at risk based on their cognitive and physical abilities does not live in a dystopian future of genomic discrimination.  It has tenure and a chair with a name at Princeton — endorsing the murder of infants with disabilities — and is currently at work in many state legislatures around the country, trying to pave an easy path to physician-assisted suicide for people with disabilities.

Image: Cartoon showing woman in a wheelchair looking at two entrances to a building: on the left, a door labeled "Suicide Prevention Program" that is up a set of steps; on the right a door labeled "assisted suicide" which is up a ramp with the international symbol of accessibility.

Cartoon credit:  Amy Hasbrouk, Toujours Vivant/Not Dead Yet.

Why is it so easy to see now that Buck v. Bell was wrong and evil, but not to come to the same conclusion about Peter Singer and the urge to make suicide easier for people with disabilities?