Category Archives: Disability Pride

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.

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*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.]

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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?

 

 

The Colorado Women’s Hall of Fame announces the Inductee Class of 2016: Laura Hershey

Our dear — sadly late — friend Laura Hershey is being inducted into the Colorado Women’s Hall of Fame.

Laura Ann Hershey – Internationally recognized writer, activist and advocate for the disabled community who challenged and changed the public’s perception of disability – Littleton, CO. Consultant to Denver metro cities and entities assisting with ADA implementation. President’s Award recipient in 1988 for her efforts nationally, including pressuring the Social Security Administration to allow disabled people to work, and lobbying to increase visibility of LGBT people with disabilities, to improve Medicaid services and to promote the rights of home care workers.

This fills my heart with joy at the choice, and sadness that she left us way too soon, both because I loved hanging out with her and because she wrote things like this:

Telling

What you risk telling your story:

You will bore them.
Your voice will break, your ink
spill and stain your coat.
No one will understand, their eyes
become fences.
You will park yourself forever
on the outside, your differentness once
and for all revealed, dangerous.
The names you give to yourself
will become epithets.

Your happiness will be called
bravery, denial.
Your sadness will justify their pity.
Your fear will magnify their fears.
Everything you say will prove something about
their god, or their economic system.
Your feelings, that change day
to day, kaleidoscopic,
will freeze in place,
brand you forever,
justify anything they decide to do
with you.

Those with power can afford
to tell their story
or not.

Those without power
risk everything to tell their story
and must.

Someone, somewhere
will hear your story and decide to fight,
to live and refuse compromise.
Someone else will tell
her own story,
risking everything.

Interesting note:  I went to look for this on the internet and discovered that it was made part of “Rise Up O Flame: A Ferguson Worship Toolkit for UUs.

Miss you, Laura, and so glad you are being recognized for your contributions to our wonderful state.

Client-Centered Practice

A few years back, when I started to co-counsel with the University of Denver Civil Rights Clinic, I started hearing about “client-centered lawyering.”  “Yeah yeah yeah” I thought, “I listen to my clients, too.”  But as I worked more closely with the professors and students at the clinic, I came to appreciate the extra layer of thought and respect that this brought to the representation.  Often I would find myself proposing a perfectly rational, highly effective, kick-ass course of action, only to hear a student or professor say, “I wonder how our client would feel about that.”  Or I would prepare to tell the client why our proposed course of action was right, just, logical, and effective, and a student or professor would suggest that perhaps we first talk with the client about his goals.

It has been a good learning process for an experienced lawyer, especially one who cut her teeth as the nth chair associate in a giant firm — representing large corporate clients, where the client’s moral, ethical, and personal goals for the litigation were as distant as the moon — and then moved into a plaintiffs’ class action practice, where the “client” is simultaneously the individual and the class.

Client-centered lawyering has been at the top of my head for a variety of reasons, and so it was this morning as I read this account of parents — a blind mother and sighted father — meeting with the education bureaucrats who were making decisions for their blind daughter.*  The question was, what sort of cane should the daughter be provided and taught to use?  First, for me, a lesson in the fact that there are multiple types of white canes:

The discussion surrounds the selection of which cane Marley is to use, we want the longer, lighter white cane, while she feels that a much shorter, 3x heavier with a que ball end cane is the “best choice”.

The writer/dad discusses the practical pros and cons of the two types of cane, along with this essential history:

Most importantly, the difference SYMBOLICALLY from the short, red ended heavy cane vs the long white cane. The standard cane originates in the UK circa 1921, by James Biggs, who found himself newly blind and painted his walking stick to become more visible. (White cane, Wikipedia.org). The long cane was developed in 1958 by the Iowa chapter of the National Federation of the Blind, designed to “enable us to walk faster without diminishing either safety or grace”(The Nature of Independence by Dr. Kenneth Jernigan, NFB.org) One was created from a “discomfort from the amount of traffic around his home”, and designed for the purpose of “being more visible”. Of its entire development from England in the 20’s, to France in the 30’s and the lions club in America in the 50’s, the main theme from its inception, to its development and adoption into law, is the concept of “visibility”, alerting others of a blind person. In contrast, the long white cane was created from a dissatisfaction for “the short, heavy… type, and we youngsters associated carrying a cane with begging, shuffling along, and being helpless”, and designed for the purpose of “advancing on the road to freedom and independence”(Jernigan). And THOSE are facts…
~In short, one symbolizes “look out, I am a handicapped person, and I can’t get around that good”, while the other symbolizes “look out, I’m a handicapable person, and I’m coming through!”

And here was the response of the “Orientation and Mobility Professional” in a meeting with the writer, his wife, and the daughter’s educational team:

Every time we speak about what the white cane means, or mention the philosophy of advocacy and higher expectations/ standards we live by and expect for ourselves, including Marley, a look of sheer disgust smears across this teachers face, followed by a heavy roll of the eyes and pulling of her brows as high as she can, finishing off with a sarcastic smile to the others (Marley’s principle, kindergarten teacher, low vision teacher and special services coordinator) CLEARLY saying without using words, “who the fuck do you think you are to make decisions for your daughter, & I can’t believe we’re wasting our time listening to his shit folks”.

The words she IS using is, “what training and credentials do you have in orientation & mobility (O&M)” (to have a say in the course of your daughters independence development). She says, “I have a masters in O&M, and YEARS of experience”, she says, “Marley’s white cane with metal tip is a danger to others”.

The writer sums it up succinctly in what seems to me to be the absolute 180-degree opposite of a client-centered approach:  “I look at these divine and almighty credentials of hers as a hindrance, she has had 6 years of formal training on how a sighted person tells a blind person what’s best for them.”  It made me stop and think:  when is my law degree a hindrance to helping people achieve their real goals.  True, when they have selected law to achieve those goals, I have 30 years (starting from first year law school) of experience in how to use the tools of the legal system to achieve those goals.  But I can’t tell them what their goals are or should be.  And it is incumbent on me to provide [legal, ethical] options, and not only the options that I think achieve the goals I think they ought to have.

But client-centeredness needs to escape legal clinics and law journal articles and inform medical, social service, education, and other practices were the folks with the fancy degrees and certificates think it’s a license to tell their clients what’s best for them.  In addition, while I’m sure it’s a problem everywhere people with training and degrees use those skills to help people who lack same, but are ass-deep in their own lives, I’d venture it’s a larger problem in the world of disability.  People with disabilities know their own bodies, skills, and strategies often far better than the credentialed doctors, teachers, and social workers tasked with evaluating their lives and doling out treatment and resources.  These practices need a giant dose of client-centeredness to avoid the absurd and appalling circumstances of a sighted professional telling a blind father what was best for his blind daughter to navigate the world.

Also this particular “O&M Professional” should please go fuck herself.

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* This FB post also appears in the blog Blind Mom in the Burbs.